I am a guest this week on Able Pathways, a wonderful interview show on Blog Talk Radio which features disabled people working and living in Chicago. On the show I talk about working as a partially blind artist and musician living with Lupus. I was honored to be interviewed by Rob Pritts, who is a disabled journalist and an inspiration to so many people here in the US. For a long time I didn’t want anyone to know that I was partially blind, or that I had Lupus. I was ashamed and thought that folks would think I was inferior, or unable to accomplish much. But I joined a Lupus support group, and after seeing how so many men and women with Lupus struggle to live their lives and support their families I was inspired and heartened. My friends in the group encouraged me to share the story of my struggle, because it might inspire or give hope to other people living with Lupus or chronic illness. It’s been a little scary to step out as a disabled artist and musician, but so far nobody has held it against me, and I am proud to be working as much as I can.
You can listen to the show here – http://www.leaderarena.com/ablepathways-4-9/
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Look Mom, no hat!
Okay, this isn’t a deep, thoughtful blog entry, this is a blathering women’s vanity post… but I can’t help it. I am so happy, I was finally able to sit for photographs in a studio this week WITHOUT my trademark hat. I love making cocktail hats, and I love wearing them out, but the main reason I wore them was to cover Lupus allopecia. My hair has finally grown back now, and as much as I love them, it was really nice to be able to sit in front of the camera again sans hat 
How many times do we lose our hair, over and over again? Well, I’ve lost little bits here and there, but never to the extent that I had last winter. I was starting to look like Ben Franklin!!! I was buying wigs and hair pieces which looked horrible! I’m so glad that the flare ended and it all grew back. How many times has this happened to you? Like it’s not bad enough being sick, but having to lose our hair is like pouring salt into an open wound, you know?
This shot was taken by Jennifer Girard.
Exchange me for a star
So that I may shine
To all manner of sphere
And all eyes wander from afar.
I will not leave what I have come to love!
I will break these chains
And break these rules
And dance on the heads of evil fools!
My heart pours out in holy love redeemed
Nothing was ever what it seemed.
The tapestry of tongue and fire;
This chalice of the holy host
For long was in my hand.
I knew no place.
I felt no land;
Yet I am captain
And I command
I will not leave such place of love.
This poem was written by my friend Rita Timmins, who passed away several months ago after a long battle with Hepatitis C and Cirrhosis of the Liver. Rita lived into her 50′s with this disease, but her last few years were hard, terrible and painful ones. She lived in British Columbia and had access to good medical care, and she fought the good fight, but we lost her. She wrote this poem several months before she passed, so I decided to share it because it inspires me so much. The remarkable thing about Rita was that she never gave up fighting, even at the end. How many of use with chronic illness just feel like giving in sometimes? It’s hard to keep up the fight, day after day, setback after setback. It’s so easy to just let go of the world and let illness take you over… but Rita didn’t. She lived her life to the fullest as long as she could. She was alone, unmarried and without much family or money. But she had friends to check in on her and a poodle named Roarke who she adored, and a large online family. It wasn’t easy, but she reached out to people through the internet, which is how I met her, on a photo sharing site called Flickr. She took lovely photographs and wrote these wonderful poems and I admired her quick intelligence and strong spirit. She tried really hard to stay in the world and not give up, and she did so much with the time she had and made many friends. She was an inspiration to me, and this poem says it all, I think. Please enjoy her photo blog http://www.flickr.com/photos/ritatimmins/
Don’t give up the fight, no matter how hard it gets. Life goes by fast enough, stay alive and be a part in the world as long as you can, however you can, even if it’s just here on the internet. You might still make a difference, Rita did.
“There is nothing in which p
eople more betray their character than in what they laugh at.” – Goethe
A few years ago when my Lupus was at it’s peak it was such a scary time, and my doctors were not very reassuring. The best of them said, “Well, we don’t know which way this will go, try and hang on.” I just had a large stroke and I needed to have heart surgery. I had to take several immune suppressing medications that you Lupies might be familiar with… Steroids, Methotrexate, Cytoxin… I tried several to get the Wolf to calm down. Having Lupus is not a party, it’s painful and frightening and potentially fatal, so you take whatever drug or treatment you can get to stop that. The medications work by shutting off the immune response so that Lupus stops attacking the body. At that time my lungs, heart and brain were under attack and I was at risk of death or severe injury. I was rehabbing from the stroke, but very weak and frightened. Because they shut off your immune response, Lupus medications can cause you to become susceptible to many bacterial and viral infections - you are open and vulnerable to the world, like a person on chemotherapy, or an HIV patient… maybe worse. It’s not fun, but it’s the only way to treat it.
At that time an old friend of mine and her husband were having a party and invited me, but I couldn’t go because I was in such a bad flare. It was the middle of winter and flu season, and I was a sitting duck for any flu or infection that was being passed around because of the immune suppressing drugs. My doctor had advised me to stay away from large crowds and to avoid children and sick people during that time. I told my friends that I was unable to make the party and why, and to my astonishment they started joking about it, and nick-named me “Bubble Girl”, after the Boy in the Plastic Bubble movie in the 1970′s. They continued to joke about this and called me Bubble Girl for the following year or so, when I finally stopped talking to them.
Has this type of thing ever happened to you? Ridicule, mocking, disbelief from your friends when you tell them you’re sick and can’t keep up with every day activities? After all, you just LOOK fine… you don’t LOOk sick… it must be in your head, right? Or if you become disfigured from a Lupus rash, or you gain weight from the steroids… are there comments and judgements that you have to deal with from friends and family? The paralysis from the stroke was mild, and the side of my face hangs just a little bit when I smile, but nobody notices. I was lucky, my family never called me Bubble Girl, or made comments about my changes in physical appearance, but some of my friends did. Their reactions varied, from a few supportive friends sticking by me to some who avoided me because I looked bad and they didn’t want to associate with me because I was “ugly”, to some who actually made fun of my illness. When you get sick, you really start to see the real personalities of your friends. You see them for who they really are, and sometimes you are shocked and amazed at what jerks they really are. You might have never known, or mildly suspected, but when it happens, it hurts. It’s not like living with a chronic disease doesn’t hurt every day… then you have to deal with the betrayal and vicious mocking. But know one thing – illness and old age will come to almost everyone….unless they die in a car accident or something unexpected like that. Those people who mock you, who betray you or hurt you, are really doing it to themselves because when it’s their time to get old or get sick, who will be understanding and compassionate to them? Not too many, especially if they chase off all the experienced or caring friends among them.
The friend who named me “Bubble Girl” is bow-legged and it’s an unattractive disfigurement. Her legs are several inches apart at the inner thigh, and she wobbles a little when she walks and everyone notices unless she wears a skirt. I was her close friend for years because she was funny and smart and spirited and didn’t seem to care what people said or thought about her mild physical deformity, and I admired her for that. I never thought she’d be the person to mock me for my disability, but she was. I guess her life is just too difficult to deal with and she has to take it out on other people. I hope I never become that bitter.
Most people don’t understand illness unless they have experienced it first hand or through a loved one. You can’t blame them for that… but cruelty or abandonment from people you thought of as loved ones… that’s always a painful thing to live through, sometimes as painful as the illness, if not more. But the good thing is that it can strengthen your character and make you a more compassionate person. Our current American culture seems to glorify beauty, youth and money…and these are a part of life, but not the whole. Where there is light, there will also be darkness. Where there is growth, there will be decay, it’s the nature of the world. Illness and old age will happen some day to everyone, and we need to be there for each other through all the phases of life, and not ignore them. We will all have them.
Lupus takes so much from us, but it gives us things too. It gives us a new way to see things, and to understand people that we didn’t have before, and a strength to fight for our lives and our self respect. It gives us the opportunity to be compassionate to other people in their suffering and for that I will always be grateful, even if I am just a Bubble Girl.
“Every time you see a beautiful woman just remember, somebody got tired of her.” – Liz Taylor
When I was in my early 30′s I was living in Hollywood, and it was important for me to be attractive. I was 112 lbs, a size 4, doing yoga every day and feeling great. I had lots of dates and loved being single. I never had plastic surgery, but worked really hard at refining what I was born with. It was nice being pretty, I got into clubs without standing in line, I got free drinks, guys held the door for me, I got jobs easier than the plain girls. Everyone wanted to be my friend and that was just great because I was working on being a good, kind person and I thought that was what they were interested in. Little did I know then.
Life just bobbed along nicely for me. I found a really sweet guy and got married, and we moved into a great apartment in the Valley and he had a good job at Louis Vuitton and he had access to high fashion and could get free makeup and accessories from work, which I loved because being beautiful was part of my job… until I was diagnosed with Lupus.
Lupus runs in my family, and it killed my Aunt, so I was pretty scared. First the rashes came, then my hair started falling out in clumps. I nearly went bald the first time and had to wear a wig. My Rheumatologist put me on steroids and then I got REALLY FAT. I couldn’t control the weight gain, I would eat like 500 calories a day and I would still gain weight while taking the steroids. I had a small stroke which slightly paralyzed half of my face, and to this day my smile is now crooked. Then I started having seizures and I was so terrified that anyone would see me have one that I just stopped leaving the house. I hated myself. I was balding, pockmarked with bloody scabs on my face and I had to do physical rehab from the minor paralysis. It was a terrifying time. I had only been married a little over a year when all this happened.
I stopped singing because I was sure that nobody wanted to look at me, and I was terrified of having a seizure on stage. Many of my friends complained about my weight gain and asked me, “Why are you getting so fat? Are you just sitting around eating candy bars?” Needless to say, many of those friends fell away quickly, when I wasn’ t attractive anymore and couldn’t keep up with their standards. I became a recluse, and stayed at home painting pictures and hiding from the world. I was 35 when I totally went into seclusion.
Looking back on all o
f this, it was pretty tough, but sometimes hardships can be a blessing in disguise.
When I became ill and my looks faded, I had to start interacting with the world in a whole new way. Batting my eyelashes suddenly failed to impress people. Nobody held the door for me, nobody gazed appreciatively at me, strangers didn’t offer me their seat or do favors for me. I was ignored or even treated with hostility. When I had gained about 80 lbs after being on steroids for 2 years, I blimped out to a size 22 and people would even glare at me in public. Not people I knew, but random people in convenience stores, in waiting rooms, in line, anywhere in public. This had never happened to me before. People had always been kind to me, but looking the way I did, people were indifferent at best. My face had burst into a huge round circle known as the steroid moon face, and I was barely recognizable. I had been hiding away in my apartment for 2 years, when an old model friend spotted me out at the grocery store and was shocked that she barely recognized me. She was nice, but it was hard for her to cover her alarm and distress when she saw how I had changed. She’d worked for Louis Vuitton with my husband, and didn’t keep friends that weren’t attractive, so she never followed up with her promise of coffee and chat. I knew why and I hated myself, I hated having Lupus, and I hated the world.
It was around that time that we moved to Chicago for my husband’s new job, and since I had gone to college there I had some old friends and music contacts, but I was terrified to call anyone because of my illness and how bad I looked. I stayed alone in our apartment that first year until I ran into an old musician friend who was glad to see me, but seemed concerned at my physical changes, but not dismayed or disgusted by them. I was so grateful for that, and she got me to start going out among people again, little by little. Chicagoans didn’t seem as harsh in their appraisal of my physical appearance the way the people in LA were. I even started going out a little bit to hear jazz concerts and to reconnect with some of the musicians I had worked with. I was scared to death that they wouldn’t want to speak to me when they saw how I had changed, but most of them were just concerned for my health, and very few of them remarked upon my appearance. This was encouraging, so I gathered a group of them and went into the recording studio and began creating a new jazz record, and I started singing for the first time in over 10 years. It was around this time that I found a wonderful Lupus doctor in Chicago who took me off the steroids and got me on some more natural therapies which helped put my disease into a kind of remission for the first time since I was diagnosed years before. It was like a miracle, and to make things even better, I started to lose weight when I stopped taking the steroids. I have lost a good amount of it and I am healthier than I’ve been in almost 10 years, and my life is so much richer and better than I think it ever was… wonder why?
Why am I talking about this and telling my story? Do I seemed like a self absorbed twit? Well, I don’t think I’d be telling my story if it weren’t for all the stress and pressure society puts on women to be ultimately beautiful and desirable at all times. Mine isn’t a unique story for Lupus patients. How many of you have become ill and had disfiguring rashes, hair loss and weight gain? How many of you suffer with the decline in your physical appearance and self esteem? It’s a pretty common theme for many women living with the Wolf. But the amazing thing that all of this hardship has taught me is that physical beauty is not as important as inner beauty and self esteem, and that society and it’s standards of beauty which try to control women and ruin their confidence can go to hell. I’m in my mid 40′s now, and I see a lot of my beauty queen, model and actress girlfriends from LA going nuts… especially if they haven’t hooked a rich husband or don’t have the money for plastic surgery. Nobody notices them anymore, nobody holds the door for them, they don’t get special treatment like they used to … they have become common, middle aged women. At 45 many of them are starting to have a mid life crisis because they don’t know how they are going to get by in the world without their youthful beauty. They have to think of other ways to get attention, to get jobs, to get money… that won’t involve their looks and it either frightens them, or it boosts them up. At 35 my looks were gone, even though I hadn’t started that 40-something sag. But I learned to deal with it, and I started working on my personality, and tried to attract new friends because of who I was and what I could do – not because of what I looked like. There are lots of people who do this every day. I started taking voice lessons again and tried to get gigs because of how well I could sing and perform, not because I was any better looking than the other singers. What a twit I was! It took a lot of suffering and illness before I realized that beauty is something INSIDE of you, not your exterior. Looks fade, skin sags and wrinkles, but your brains, talent and ambition… that’s something inside of you. I don’t think society wants women to realize this because then it couldn’t control and dominate them. So I am posting this blog today to ask other women to push off the shackles of beauty and to live a genuine life and to follow their dreams and goals, for themselves… and not to live a life that seeks to constantly please other people. Who you are lasts a life time, your youthful beauty fades away and can mean very little before more than half of your life is through. What are you going to do with the next 40 years? Chase something that you’ve lost? Why not become someone new that YOU might like better? I grew up in the 1970′s during a time when natural beauty was popular. Not wearing a lot of makeup and looking like yourself. These days everyone has plastic surgery and a boob job. What’s happened to women’s self esteem in 2011? Generations X Girls that were raised on Barbie dolls are hitting menopause… how will they handle it all?
Some folks might just think that this is all sour grapes, or that I’m having a pity party for myself, but I’m not. I’m a much happier person today than I’ve ever been. I feel more fulfilled and satisfied than I ever have in my whole life. People come to hear me sing these days and I am sure that it’s because they like the sound of my voice, not because I’m a size 4 with clear skin. Maybe they like the new way I tell stories in my songs that make them feel something. I couldn’t do that when I was young and trying to be ultimately beautiful, I didn’t know what a lot of those songs really meant. I wasn’t touching people’s hearts, I was up on display… but I know a thing or two now. I try really hard to look my best, but because I am still on and off steroids and starting menopause, I am having a heck of a time getting small again, and some people still criticize my weight. But you know, people were telling me how fat I was when I was 112 lbs! I guess if you can’t control a woman any other way you must criticize her weight. I’m healthy now, and very fit, and I enjoy working out daily even though I can’t seem to get below a size 12. Sometimes I still get rashes and my hair falls out and my face still sags a tiny bit on one side from the stroke…. but I don’t worry about all of that because my new friends like me for my personality, and my fans like me for how well I can sing. I’ve had to work hard at developing a personality and talents over the past 10 years to compensate for my lost looks, and it was worth it. My friends like me now for the love that I carry in my heart for them and for myself. But I never learned to have any of this when I was trying to be a barbie doll - it was so completely lost on me. I have much more compassion for other people and what they are going through in their lives now…. I didn’t understand or have much compassion then, I was too busy trying to be pretty and looked down on other women that weren’t obsessed with beauty. I think that my struggle for physical perfection kept me from becoming a whole person because I never had to work for much back then – my smile and and tight jeans got me where I needed to go. Life seemed easier, but oh how much more I have learned about the world as an overweight, unattractive, disabled woman, and I can tell you about it when I sing and when I paint a picture. You will like this new me better than when I was just cute and batted my eyelashes at you.
Becoming a chronically ill person is a process, not an event. Learning how to accept and live your life in a way you never thought you’d have to is a big challenge, and sometimes can take years to work out. I wrote this post about performing for the National Epilepsy Foundation, and since many Lupus patients experience seizures I am re-posting it here -
I had been working as a jazz vocalist in NYC and Chicago for several years when I was diagnosed with Epilepsy. I was in my early 30′s and I found the diagnosis terrifying. I had never experienced seizures before age 33, and they started happening because I had Lupus, a genetic auto-immune disorder, which had come out of remission at that time. It actually took about a year to have the seizures properly diagnosed, because I started having small seizures, called simple partial and complex partials, which aren’t so obvious the way “grand mal” seizures are. I was having momentary black outs that felt like like dreams or sleep attacks… I would be driving, or going about my day when I would have a strange feeling of deja-vu or dreaminess which would last about a minute or so… or I would just feel like I was falling asleep where ever I was. I usually experienced fatigue with the Lupus, but my family doctor didn’t think it was just a case of being tired, so he sent me to the Mayo Clinic for diagnosis. When I was finally diagnosed there, during a 5 day EEG in the hospital, I was very relieved to learn that I wasn’t going crazy, but that the “spells” were seizures. I tried several epilepsy medications and over time the seizures became well controlled, but for a few years I was absolutely terrified to perform or get on stage, so I just quit working. I stopped singing because I was so afraid I would have a seizure in front of people, and my soul dried up and died.
I am sure that many of you with epilepsy can imagine the terror of it. Being on stage in front of a group of people and losing control of yourself while everyone watches. I felt inept and flawed, and thought that no matter how well I could sing, nobody would want to ever see me in a show or concert if they knew I had epilepsy. In fact, I stopped even going out with friends and doing things in public because I was so afraid of what people would think of me if I had a seizure in front of them. I had never seized in public before, because I always experienced a 20-30 minute aura before each seizure. The aura is a period of time where you feel sick to your stomach or dizzy with a headache, and it’s kind of like your body’s natural way of warning you that you’re going to have a seizure later. When I start to notice the symptoms of aura I usually get out of the public place I am in, and get to a bed or a soft couch where I can have my seizure eventually. But even with this great, built-in alarm system, I was still socially paralyzed. My husband and close friends tried for a few years to talk me into getting on stage, and they never gave up on me. They reasoned that I would always get a warning, so I could get off stage in time to go somewhere private and safe to have the seizure, but I was just too afraid.
After a few years of taking epilepsy medication the seizures lessened in frequency and severity, so I started recording music again. I had missed singing so much, it was like a part of my soul was missing the whole time I was sick. It wasn’t scary to be in a recording studio with just a few people, so I recorded 2 jazz albums over the period of 2 years. When I finished them, my friends eventually talked me into have a CD release party at a jazz club in Chicago, and I started seeing a therapist so that I could talk to someone about my performing fears. It took almost 10 years to get me on stage again, but last year in July 2010 I had a CD release party for one of the recordings at a well established jazz club in Chicago, and we had 88 people show up! It was pretty scary being up there in front a big crowd like that, but I got through the evening with no seizures or auras, and a happy audience who enjoyed the show and bought lots of CD’s. I perform regularly now in Chicago, and I’m not afraid anymore. I have never had a seizure while working, and even if I did, I know that I am lucky enough to have auras first, which afford me about 20-30 minutes of escape time. I always work with top-notch musicians who know me well and would cover if I needed to leave the stage at any time, but it hasn’t happened. I am also very careful not to drink alcohol or use any substance that might irritate my condition, especially while working, and I feel very confident now that I am healthy enough to work again. I am so glad to have my life back after 10 years off of the stage. Epilepsy can rob you of your freedoms in so many ways, it’s always a victory and a blessing to get them back.
http://epilepsyfoundation.ning.com/profiles/blogs/stepping-out-of-the-shadows
“The Flower that follows the Sun does so even on cloudy days” – Robert Leighton
There’s this myth in America that you are supposed to have everything that you could ever dream of and be completely happy… you should attain your hearts desire … you deserve it! And wouldn’t that be nice? If everyone could be happy, beautiful, loved, well fed, healthy, appreciated. It’s certainly something to strive for, but in most cases it takes a lot of work and effort to achieve only some of those things some of the time. It takes a lot of planning, sacrifice and elbow grease to negotiate a balanced life, if you are lucky enough. But some may not grasp the concept, they think it’s their right to have everything they want and that everyone should be beautiful and perfect, and if you’re not then there’s something wrong with you – if you are different and not molded into their stereotype.
The first day of High school was nerve wracking for me. It’s a common and challenging transition for a lot of kids, and I was no exception. I went to a private school, where they had a freshman initiation rite… a kind of hazing that was still allowed in 1981, which would be outlawed these days. The school forced the freshman to wear white beanies on their heads and encouraged them to kneel on the floor if they were caught on school grounds without it. If you were negligent, you had to recite a long “Plebian Pledge” to any demanding Senior, who could make you carry their books or do tasks which were sadistic and degrading. I always had my beanie in my purse and was ready to put it on at first sight of a senior, just like the rest of my classmates, and I was anxious to meet and befriend others, to hide in the safety of a group and avoid being singled out. The school completely enforced this horrifying practice, and even stopped classes for a day so that something called “Freshman Games” could be held in the gym at the end of the first week of school, where Freshman were forced to participate in embarrassing and painful stunts like rolling a pea across the gym floor with their hands tied behind their backs and other mockeries. I didn’t like it at all, but since it was a good school with an excellent academic reputation, I tried to go along with it the best I could.
There were 2 girls that stood out in my homeroom that first week, because they were strikingly different from everyone else. One girl wore a wig, and she looked tired and thin with deep circles under her eyes. She would slump at her desk and fall asleep during class. The other girl that I noticed was very pretty, but half of her face hung down, like it was paralyzed, and it didn’t move with the other side. I wondered what was wrong with them, but I was afraid to ask.
Later that week, I had forgotten my beanie and was ambushed in the hall by a bunch of eager, sadistic seniors. They pushed me down on the floor and kicked my pile of books out of my arms and demanded that I say the plebian pledge because I was caught without my beanie on. This really didn’t fly with me, because I had spent many years in a public school where I learned to take care of myself, and in so many street words I told the snobby private school seniors what to do with their pledge and threw some punches. I don’t think they were expecting this kind of rebellion and they took off and I followed. Across half the campus later, in a dark hallway, I came upon the same group of seniors as they began taunting the sick girl with the wig who was cowering in the locker bay with the girl with the paralyzed face. Of all the freshman that they could taunt, they had to pick the most vulnerable, and this really disgusted me. They were trying to pull the beanie off of the girl with the wig, while she was trying to duck and run. One of them grabbed at her beanie and actually pulled off her wig with it. The poor girl fell to the floor crouching and covering her bald head, sobbing. Instead of acting responsibly and giving this poor girl her wig back they began tossing it around to each other, mocking her, calling her a bald freak. The girl with the paralyzed face was yelling at them, and trying to get the wig back, so I joined in. I pushed the senior girl closest to me, who was cackling and clutching the wig, and got it away from her. I guess the three of us made a formidable team against the seniors so they took off, with threats of more violence in the future. I gave the sick girl back her wig and we helped her up off the floor. She went into the lav after that and vomited for about 5 minutes, and we stayed with her until she was better.
The girl with the paralyzed face was named Michelle Russo, and she quickly became my best friend, along with the girl with the wig, who’s name was Stacy Daubs. Stacy had a brain tumor and was taking chemo her first week of school. Michelle had a brain tumor the year before, and it had been removed but her face was half paralyzed from the operation. It was odd that there were 2 girls in my small freshman class of 137 students who had brain tumors, but they quickly became my good friends. I was healthy at the time, and didn’t know that later in my life I would have to deal with Lupus. I liked these girls because they were fiesty and they stood up to the horrible hazing that I so detested, and we became a force to be reckoned with. We stuck together like glue and whenever we saw a senior punishing a freshman we harassed them relentlessly, as we had been harassed, and we quickly gained a reputation as trouble makers, hated by the seniors and avoided by the kids in our own class. But it didn’t matter because we had each other. We were close for those first few weeks of high school… and then Stacy died.
There was a lot of guilt among the bullies, and eventually Michelle and I were left alone. Our friendship grew and we stayed together constantly that first year. We hung out after school and on the weekends, and I met and became a part of her family. But Michelle’s life was still anything but easy. She had been recently diagnosed with a fatal genetic disorder called Neurofibromatosis, otherwise known as “The Elephant Man Disease”. This caused her to continually grow tumors both inside and outside of her body. It was a terrible disease, and Michelle kept developing life-threatening tumors inside her brain, and small tumors all over her body and under her skin. Still, her parents were very strong people, and they encouraged their daughter to have the most normal life possible, despite her suffering and illness. She became a cheerleader and cultivated many friends at the school over the years. She was a good student when she wasn’t sick, but sometimes she would have to leave school and go into the hospital to have tumors removed from her brain. Occasionally the surgeries caused small strokes, and she would have some paralysis and had difficulty walking around the school, but she never quit going and tried to be just like any other student. I spent many weekends visiting her at her home while she would be laid up after a brain surgery, helping her with homework or just hanging out. Sometimes she would be too weak to go out and do anything, like shopping or skating, and we would just watch tv and talk.
Her mother, Gloria Russo, was a very passionate and determined woman, and her Father Frank did everything he could to take care of his oldest child and tried to provide her with the best medical care. They traveled out of state to see specialists at big hospitals and had many opinions and treatments, but the sad reality was that the disease was fatal. Instead of being morose and self pitying, her parents continued to fight, and do as much as they could for their child, to give her the best quality of life and they made sure that she experienced everything that a girl her age would do, like going to school dances and cheerleading.
I can remember Gloria talking about the various doctors that they had gone to, and how some just told her to give up on Michelle and forget it. This angered Gloria the most, because she wasn’t just going to lay down and give up hope on her only daughter. Gloria did everything she could to get Michelle the best treatment in the US, and tried to give Michelle an excellent quality of life as long as she could. Michelle graduated from high school with good grades. She had become partially deaf by then, from tumors that grew near her ears, so they took her to sign language classes and enrolled her into the National University for the Deaf – Gallaudet, in Washington DC. They wanted the best for their daughter, as long as she was alive, and they never once sat around and felt sorry for themselves. They wouldn’t let Michelle just hide from the world and waste away from illness, even though she suffered tremendous physical and emotional pain. They kept her active and out in the world, and always focused on the positive. Throughout her short life, Michelle had numerous surgeries to remove life-threatening tumors from her brain, and the disease eventually ended her life when she was aged 25, but she had lived a full life in those years, and experienced almost everything that normal kids and young adults experienced. She even got married and published a book of poetry called “An Elephant’s Tears” before she died.
Michelle has been such an inspiration for me, and for my family. When I was diagnosed with Lupus and became very ill, my Mother took a lesson from Michelle’s parents and didn’t just settle for the first useless medical opinion that we got in our small town. We traveled to larger cities, and I eventually ended up at Harvard Medical School where I was first treated successfully, after several years of floundering in our small town. I had learned a lot about determination, faith and PERSEVERANCE from my friend Michelle. I have also learned how NOT to feel sorry for myself, and get on with my life regardless of my physical challenges. Michelle never sat around and felt sorry for herself, she and her family were always looking for that next treatment or therapy that would improve her quality of life. My illness is very difficult but certainly not as painful and challenging as Michelle’s. Over the years I am reminded of her constantly, when I start to feel sorry for myself and wallow in my suffering I think of her, and I wonder where she found the courage and strength to face her disease and the daily challenges it brought. I remember how she got married just a few weeks after a brain surgery. They had planned a large Italian wedding and then Michelle was diagnosed with another brain tumor, but instead of canceling the wedding, they went on with it, and Michelle went down the aisle just 2 weeks after the surgery to remove that tumor. Nothing but the most severe pain and suffering kept her down, and that only held her down for short periods of time. She always got up after a brain surgery or a stroke, and kept on living as much and as hard as she could.
So when doctors ask me how I deal with my disease, and how I keep coping, I tell them about Michelle, and that usually makes them think a minute or two, and then I tell them that no matter how hard I think I have it I know that there is always someone out there who has it 10 times worse. And that’s just the way the world is, it’s never perfect or easy for anyone. Very few people are lucky enough to have a privileged and happy life with everything they want in it. Some people try hard, and some have to work at it more than others… and when they do, and you are lucky enough to know them and witness their battle, they are the most inspiring people to know.
“Perseverance is not a lo
ng race, it’s many short races, one after the other.” – Walter Elliot
Today I’ll start anew. It seems like this happens often enough, and I should be used to it, as a Lupie… but I haven’t had a flare in almost a year and I was getting spoiled. But the flares always seem to come back, because there is no cure for Lupus, and it’s eventually fatal.
Here I am at my gym, at the pool, my favorite place to be. I usually swim about 6 days a week, but I haven’t been able to get there much lately, and I am so glad to be back. I have just made it through 2 months of a nasty Lupus flare, which is finally backing off. A virus started it all, revving up my immune system and triggering the Lupus. I experienced unrelenting fevers, rashes, seizures, and kidney complications, and I eventually had to take steroids. I couldn’t work out regularly, which made me ancy and anxious. I took steroids which made me moody and caused me to blimp out – gaining 12 lbs! I had a fever of 103-104 for several days in a row… which was very painful and unforgiving. The rash wasn’t bad this time, only a little on the back of my neck where the bleeding and scarring wasn’t so evident. The arthritis wasn’t so bad this time, thank goodness, and I haven’t lost any hair lately … but it was not fun. It seems that my whole life has just been a series of starting and restarting myself after each flare.
I will get back to the gym, in increments. I will start with the gentle swimming, and move back to the eliptical and weights, as the flare subsides and my body can handle it. I will take off the 12 lbs I gained on the steroids, as I ween off of them now. I will be able to fit back into my clothes and I will be able to work again as I return to healing… if all goes well and the wolf doesn’t decide to take a second bite.
How many times, as Lupies, do we have to re-start our lives? We have to stop the flow of our lives suddenly. Halt our plans, our daily duties, our work… to wrestle and try to overcome the wolf. I’ve been fighting it since I was 15, so I guess that I’m used to it by now. It’s made me stronger and more persistent too, in the other facets of my life. If something knocks me down emotionally or career-wise, I generally take the time to heal up and go right back at it. A process I learned from living with chronic illness. But I get really tired of having to do this sometimes. Taking that 12 lbs off will happen in about 6 weeks… but it’s just not fun, you know? Trying to get back to my exercise routine and lift the amount of weights again will be a painful process, but I will do it because I enjoy being strong and fit. Plus the weight bearing exercise combats the osteoporosis caused by the long term steroid use. And of course the worst part of it was missing work and having to catch up with that. Thank goodness I don’t have children, they would suffer the most I think. How do you do it? How do you get yourself going again after being hit with a flare? How do you find the strength and stamina to pick yourself up and start all over again? I am always starting over, my life seems to be a constant renewal… a second chance. How is it with you?
This is just a short post, to talk a little more about steroids… The picture on the left was shot of me at the height of my steroid use a few years ago, during the worst Lupus flare I’d ever had. I took them every day for over a year. I got really huge, and since this pic was shot I’ve stopped taking them daily and I have lost 70 lbs. People think I am fat now, but they didn’t know me then. Steroids stop the Lupus from destroying your kidneys, skin, lungs, brain… whatever it’s attacking, but the side effects are really, really awful. Weight gain, blood sugar imbalance, seizures, insomnia, anger management problems just to name a few. Sometimes the cure for the disease is worse than the disease itself, or so it can seem. I just wanted to post this pic because people think I am fat now, and I only have to take the roids a few times a year… but when I was living on them non-stop… what a nightmare! People are so quick to judge you by your appearance, you know? Nobody knew that I was taking a drug that blimped me out like this, they thought I just sat around eating bags of potato chips, which wasn’t the case. It was so painful to live like that and I thank God for every day that I don’t have to take the drug. Here’s a brief article by the Lupus Foundations about steroids and Lupus – http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroom.aspx?articleid=86&zoneid=8
I am interested in hearing about your experience with steroids. Does Prednisone or Medrol help control your Lupus? Did you balloon up like I did? Did they make you cranky and moody? I am grateful that they can stop the progression of my disease and keep my kidneys from failing, but I really, really hate them too. How do you cope?
“Doctors will have more lives to answer for in the next world than even we generals” – Napolean
If your car was continually breaking down and you took it to a mechanic to be repaired, and the mechanic you went to kept trying to repair it, but every time you got your car back it broke down again and you had to pay thousands of dollars to get it fixed each time, what would you do? If you ask the mechanic why the car keeps breaking down and they tell you that it’s all in your head and that the car is fine…. Would you go back to that mechanic?
How about your body? If you keep getting sick and the doctor you go to can’t quite figure out what’s wrong with you and doesn’t help you feel better… and is charging you thousands of dollars for useless treatment …would you keep going back? Isn’t your body more important than a car? It sure is, yet many people will continue to go back to the same doctor who can’t diagnose the problem or fix it, but will still charge you thousands of dollars for little, except more suffering .
Here’s my story about misdiagnosis and doctor abuse. Several years ago I started having dizzy black-out spells. I would be happily going about my day and suddenly feel like I was going to fall asleep, or just pass out, and I couldn’t control it. I would become very dizzy and nauseated and have to sit down before I collapsed. It was like just falling asleep, and sometimes before I went into the black chasm, I would start to remember the dreams I had from the previous night, and they would play in my mind like a short movie before the blackness came, which really freaked me out. I called them “sleep attacks” because I would go totally limp and need to get to a safe place to sit or lie down, so I wouldn’t fall. I would also have a killer headache after I woke up from the spell, a few minutes later. Having Lupus, I had dealt with all kinds of crazy symptoms, but this kind of thing was new to me. It even happened once when I was driving to the store, and I could barely pull off the road in time so I could rest my head on the steering wheel. I remember that episode clearly because I was very, very dizzy and the car and the road were spinning in circles and I was terrified that I was going to crash, and when I woke up from the spell I had peed on myself. I was terrified, and wasn’t sure if these episodes had anything to do with Lupus so I went to my family doctor who referred me to the Neurology dept at the Cleveland Clinic. They are rated in the top 10 hospitals for Neurology in the US and I was very happy to be going somewhere with such a great reputation.
It took a few weeks to get in, but when I finally saw a Neurologist there, I was surprised that he was short and terse, with a very condescending manner. Having dealt with doctors all my life because of Lupus, I didn’t think his behavior was so abnormal because some doctors just don’t have a good beside manner, but I immediately felt on the defense anyhow. He had read my file before I got there, and within 5 minutes of meeting me he declared that I was having panic attacks due to anxiety and that I just needed some Valium, and he wrote me a script and told me to get some counseling. I was floored, because I didn’t know anything about panic attacks, and I felt so foolish and embarrassed for having traveled all the way to Cleveland for something like anxiety. So I went home to my family doc and told him all about it, and he wasn’t happy at all.
My grandmother had epilepsy. She had grand mal seizures and I remembered them from the time I was 3 years old. She used to have them when she baby sat me, and I remember having to take care of her while she had them, and I remembered that she sometimes used to pee on herself while having the seizure. As a young child I was terrified each time this would happen if there weren’t any adults around, but as I got older I just understood that it was a seizure and that when it was over Grandma would be herself again . So I talked to her about my spells, and she said they sounded like seizures to her. She told me that she would often have the “sleep attack” feeling and would have to lie down, she said that this was called an aura and was a sign that the seizure was coming.
My family doctor then referred me to a Neurologist at the Mayo Clinic in Rochester, MN. It was a very expensive trip and I was pretty nervous about because I didn’t want to spend all that money just to have someone tell me I was a kook who suffered from anxiety. I had spent a tidy sum already at the Cleveland Clinic. When I got to Mayo and met the Neurologist I was pretty nervous, expecting to be told that I was nuts again. But when he took a look at my records and listened to my previous experience, he just smiled and told me that I wasn’t crazy. He suggested that I was having Complex Partial Seizures, and that they needed to test me to be sure. So I got hooked up to a bunch of wires and stayed in the hospital for a few days until I finally had a complex partial seizure, which they caught on the EEG. My diagnosis was Epilepsy, not Panic Attacks, and they put me on a seizure medication and the spells stopped… it was like a miracle. I could live my life again, uninterrupted. I could drive a car after several months on the medication. It was the best thing that had happened to me in a long time.
As for that creep at the Cleveland Clinic, I did pay several thousand dollars for that consult, which was never refunded, even though he made an incorrect diagnosis, which might have cost me my life if I had never followed up with better care. I will never, ever go back to that hospital again, and I am out of all that money I paid. If I hadn’t questioned that doctor’s diagnosis and tried another at a different hospital, I might still be having seizures or worse…. I’m glad that I didn’t just accept the diagnosis that felt very wrong. Why should you?
If your doctor isn’t able to figure out what’s wrong with you, and you continue to suffer with symptoms, and you take all kinds of different medications and nothing improves… why keep going back? You are probably paying a ton of money for very little relief. If this was your car, and the mechanic couldn’t fix it but kept charging you lots of money, would you go back? Why should a doctor’s services be considered any different from a mechanics? You are paying a lot of money for both… when there are plenty more doctors in the world who are more than willing to take your money… why stay with one who can’t fix you? Your body is so much more important than a car.
