by: Priscilla Esposito
I feel like I’ve been going up against one hurdle or another for such a long time. It’s hard to know where to begin. I have battled kidney cancer and thyroid cancer. In the midst of all of this I started getting this red rash on my legs. It would come and go. At one point the pain and rash was very bad I went to the ER at a local hospital and they told me it was contact dermatitis to use cortisone cream. I tried using the cream but still the rash kept coming and going.
In 2007 I went to Disney as a chaperone for my daughter band trip. I noticed on the plane that my legs felt odd. They were burning and throbbing. I figured maybe because I had been standing for such a long time and then the plane was crowded and cramped. So I took some Tylenol and tried to ignore it. By the time we all went to our rooms that night (it had been a long day of go, go, go) I undressed and almost fainted when I saw my legs. There were huge red blotches all the way down from thoughts to my toes. My ankles weren’t even visible anymore the swelling was so bad. My roommate became alarmed. I told her that it was just dermatitis (while I was trying to calm my own fears down) and that I had cortisone cream with me. I would just rest and it would be better in the am. Well you all probably just said the same thing I did, yeah right! In the morning my legs had calmed a bit however it was another full day of being on the go. I did not know what was happening. There was a registered nurse on the trip that saw my legs and all she said was wow. No help whatsoever. Anyway, by the time we were on our last day there, I had to sit out most of the day’s activities because the pain I was in was unbearable. My daughter was concerned. I kept telling her no need to worry, it will be alright. When we returned home, I stayed off my legs as much as I could. Unfortunately, with working, being a single mom of two, the daily running around to sports activities or events that wasn’t a lot.
The event passed and I went about my usual crazy daily grind. Now during these episodes I had seen a few different doctors: endocrinologist, gyn, general, neck surgeon, oncologist/hematologist. No one ever suggested I see anyone else. They all just made note of it and went along with the dermatitis diagnosis. I had to undergo another neck biopsy because of swollen lymph glands that were inconclusive on scans and were lighting up on the pet scans. The day of surgery (I was put under general anesthesia because they wanted the whole lymph node) I had the rash on my legs. The anesthetist or nurses saw my legs, questioned the rash but just put on compression stockings and into surgery I went. I was like this for several more years. I would get tired, lost quite a bit of weight, legs would swell and just didn’t feel right. I would tell the Dr’s that I saw but I was treated for anemia, carpal tunnel, hypothyroid, low calcium etc etc….. My illness list grew and grew. Every time I went for a scan, MRI or ultrasound I would come up with a question of something brewing. Of course automatically the fear of another cancer would kick in. It was the hurry up and wait game for have a test wait for the diagnosis.
After years of this, I saw my oncologist/hematologist and my legs were covered with the rash and looked awful. He grew concerned and referred me to a dermatologist for a biopsy. Now I grew concerned because I had never seen him react like he did. He is usually laid back. The urgency and different facial expression told me, I’m in trouble.
The dermatologist saw me a few days later. For meeting her for the first time she was no nonsense. Very matter of fact but with few words. Never even gave a hint as to what she suspected. She took three biopsies. One from each lower leg and one from my left thigh. The holes that she left were not sutured just bandaged and I was told to just take it easy for a few days and drink Tylenol and ice for the pain. I did as she instructed and went back to work after a few days. I was in the grocery store one afternoon and I get a call from the dermatologist. She started rattling off information that left me stunned. I had no idea what she was talking about. She sounded alarmed and insistent that I be seen by a rheumatologist ASAP. By the time I got off the phone, my daughters asked me what happened because they saw the look on my face. So I told them that the dermatologist had said I had a disease called Vasculitis. That I needed to be seen and treated for it ASAP. That it could be dangerous to my other organs if they weren’t affected already. My blood levels were dangerously high and that there was also a marker for lymphoma. She would call my oncologist with all the information. By the time
I got home I went on the Internet and looked up Vasculitis. As I read the symptoms I kept saying to myself yup, yup, and yup to different items. I then saw the pictures and I was dumbfounded because my so called dermatitis looked exactly like the pictures. The first rheumatologist I saw was rude, condescending, and kept insisting that I had to have hepatitis. She ordered every blood test avail. Everything for hepatitis came back negative. She didn’t seem to sure on how to treat me because of the other underlying issues. I just kept getting a feeling I should seek a second opinion. So I did. I met this new young doctor who was a colleague of a doctor that was well known and respected in our area. He educated me on Vasculitis and went over the lab work that I had copies of. I was given a diagnosis of lupus, and cryoglobulinemic Vasculitis.
Now that’s a mouthful. He gave me a list of steps he would go through for treatment. However my issue was I didn’t have medical insurance. So now I was in even a bigger predicament. He went over a typical price of one drug was $500. for a five day supply. I almost fell off the table. Because my numbers were so bad he wanted to begin aggressive treatment with cytoxan. He informed me it was a drug used for chemotherapy and it would be once a week for 6 months. That the hospital had a fund for people in need of treatment with financial need. So after applying and being approved I began treatment. I remember sitting in a tan lounge chair, looking at others around me who were being treated for different illnesses with chemotherapy and thinking I shouldn’t be here. The nurse came over and went over what was going to be happening, symptoms, reactions and the loss of hair. I did cry when she mentioned it. My sister and daughter just looked at me and kept very quiet. I could see that they were just as scared as I was. So I knew right then and there, I had to fight. That no matter how sick I felt, I would need to just suck it up and do what I could.
Little did I know that my life as I knew it changed the day I received the diagnosis. I had to take a leave of absence from work. Socially I retreated. I didn’t speak of my illness to many. I kept things private. After the first course of treatment, my numbers went down a bit and I began taking injections of methotrexate. On one occasion a week after cytoxan treatment I ended up fainting and becoming very ill at a department store that I ended up being wheeled out. The next time after another infusion I went to church. I hadn’t felt ill and suddenly I began getting dizzy, sweating profusely and down I went. Talk about life’s most embarrassing moments. I was wheeled out of church on an ambulance stretcher. I had never fainted in my life. My lymph nodes became enlarged again and my general physician sent me for more scans. During this scan they found lymph nodes in my chest questionable.
Now I was referred to a Thoracic surgeon. I underwent a procedure to take lymph nodes out of my chest. I woke up to a chest tube and stay in the hospital. I was not happy at all. The Vasculitis started flaring again. I was given high doses of steroids and methotrexate. Again the biopsy results showed inconclusive, possible lymphoma. Due to all these complications I made a decision to be seen by a third opinion at a well renowned hospital outside of my state. I went to Boston University, Vasculitis Center. The doctor who saw me had gone over all my medical records and performed a physical exam. He advised me that if I wanted he would consult with the rheumatologist in CT and I could be his patient too. I agreed given that he treated Vasculitis readily. He explained that the term Vasculitis is broad. That based on some of my physical appearance Sjogren’s was present. My case was complicated because of all the other medical issues. Lymphoma was a risk I would encounter. He agreed with the rheumatologist in the course of treatment. That gave me a sigh of relief. So I continued seeing all the Dr’s including the one in Boston. The flare ups started again more predominantly around 6 months after the cytoxan infusion. I began having trouble with my GI tract I had always suffered of IBS. I became so I’ll, I ended up in the ER with bleeding. I was tested and admitted for different illnesses: colitis, c-diff. A flare up started but this hospital had no idea how to treat it. I had my family contact my rheumatologist and advise him what was happening. He then called the hospital advised them on a course of treatment. The GI doctor questioned if Vasculitis had affected my GI tract. I was told there was no way to know exactly because the veins that would be affected are small. I was released and came home to rest. About a week later I noticed one night I was having bad pain in my chest. It bothered me to sit, stand, breathe or even lay down. I tried not to pay too much attention to it. The following day I didn’t feel well but I went to the beach to relax with my daughters. I figured it was everything I had been through recently I was still delicate GI wise. While I was at the beach again I couldn’t sit, lay down or get comfortable. I told my daughters I wasn’t feeling well and we should leave. My daughter drove home, as I was walking up the walkway to my home I began to have very bad pain that my legs buckled and my daughters caught me and rushed me to the hospital. In the ER after a few test they determined I now had blood clots in both lungs. They proceeded to advise me of the risks, put me in ICU. Talk about being scared. It was awful.
While I was in the ICU an intern came in and seem to have some knowledge of Vasculitis. He made me start thinking if any of what I had been through was due to Vasculitis. That’s when I started going over all I had endured. I saw my rheumatologist and he agreed that the colitis, blood clots and other illness could all be related to Vasculitis. Working was ill advised he wanted me to take it extremely easy. My place of employment unfortunately wasn’t let’s say too happy and became a nuisance on having forms for a leave filled out. I was given an ultimatum that I needed to be back at work by a certain date or I would be let go. They couldn’t accommodate my needs. After working for them for such a long time I couldn’t believe that’s how I was being treated. They now knew the seriousness of my health issues yet it didn’t matter. I spoke with my Dr’s in regards to my place of employment and they all agreed. Working was detrimental to my health.
I began the process of applying for social security disability. The paper work, doctor appts and denials from social security was too much to handle. My anxiety level was very high. Financially I was taking a hit and providing for my daughters was extremely difficult. Thank goodness for a few good friends and family. They kept me going. I finally contacted my state senator Dodd. I explained the situation to his liaison, gave them all the medical information and records. After a few phone calls they had my file presented to a judge. I was then asked to go to court for a hearing. The stress I was under, was more than anyone should have to go through.
I appeared before the judge (with a nice flare up) and answered his questions. I will never forget a statement he made “this lady has worked 2-3 jobs at a time. Her work history is impressive!” I was granted disability that very day. My health has declined even more since that time frame. Walking for an extended amount of time is definitely a no-no. My rheumatologist, whom I relied on, decided to leave the practice and I was left with his partner. This rheumatologist relies on prednisone and I dislike it. So we do have some tension filled discussions but then we compromise. He disliked the use of cytoxan because of my previous cancer history.
I began undergoing Rituxan infusions. He also began Cellcept therapy. I under go Rituxan therapy approximately every 4-6 months. While I have been under this therapy I have notice it’s not as effective as cytoxan was. He advised me that we have another option called plasmapheresis. I’m not to keen on that form of therapy so I’m hoping it doesn’t come to that. He has made it perfectly clear that I can die from this disease. He has also told me that I need to undergo Rituxan therapy or plasmapheresis for the rest of my life. In the last several months I have undergone several tests to check for lymphoma. No one can give me a definitive yes or no. My lymphoma nodes get very large, under scan they show up questionable but then I undergo Rituxan therapy and they shrink In size. I’ve notice a correlation between the lymph nodes and therapy. I’m in that grey area still. There maybe another biopsy in the next several months. If it’s one thing I’ve learned, everything we all go through medically has a correlation to the Vasculitis diagnosis. I’ve had numerous hospitalizations over complications from Vasculitis.
I’ve learned that we are our own best advocates. Go with your gut instincts. If something doesn’t seem right or you are not getting answers, keep asking questions until you do. In the last couple of years, my physical limitations have increased. Walking, going up and down stairs, driving, shopping or any physical activity is a struggle. There are days I cannot move. My body just hurts. The swelling is present most days. Some days I get sad thinking of how independent I was and now I need a lot of help performing simple tasks. I try not to let it show to others and I’m not very forthright explaining my illness to people. I don’t like the pity look people get when they find out. The one thing that really sends me over the edge is the statement, “but you look so good”. The reality is I’m in pain, can barely walk, my legs look awful with all the scarring from flare ups! I know that I can’t say that so I just grin and bare it. My road hasn’t been straight and narrow. There have been a lot of ups and downs. Everyday I get up and can do a task is a good day. I look at others around me and realize I lead a richer life than they do. I try to live life to the fullest.