My doctor recommended a Rheumatologist and I had to wait a couple weeks for an appointment. In the mean time I started to do some research on Lupus. I didn’t know that much about it and wanted to find out more. I always thought it was just a rash on your face so I’m thinking “Oh this is no big deal after everything else I’ve been thru. I can deal with a rash.” Boy was I wrong. I hadn’t gotten an official diagnosis yet but after doing the research I had no doubt that I did have Lupus. I had so many of the symptoms – pain in my joints, Reynaud’s Syndrome (hands and feet turn white, purple, red and feel like they are being crushed whenever they get cold), blood clots, etc. I have to sit down and have a good cry and then I can handle anything thrown my way. I cried…a lot!! My daughter, Jess, went with me to my rheumatologist appointment and I was overwhelmed to see most of the other patients in wheelchairs or using walkers and canes. It hit me hard to think that this would be my future. It hit her very hard too.
We met the doctor who was wonderful. He made me feel at ease and I would highly recommend him! He sent me for extensive blood tests because no one test can determine if you have Lupus. I handed him my health synopsis which I created and give to all new doctors. (I get tired of listing all the surgeries, medications, etc. on the forms so I give them a report that has all that information on it – meds, doctors with phone numbers, contact info and a chronological list of surgeries and diagnoses. They can scan it in into their system and have all the info. You don’t have to worry about forgetting anything.) He looked at the list as a whole and could tell, given everything I had been through, that something was definitely wrong. (Even though we will never know for sure because I had never been tested for it until now, he felt that I had had Lupus for quite a while. The other doctor’s did not pick up on it because they each treated each separate problem as they arose. Many Lupus patients go thru this. It is not an easy and quick diagnosis.) The blood test results confirmed that it was in fact Systemic Lupus Erythematosus (SLE). He put me on Placquinel to “prolong my life”. He sent me on my way with a list of tests I needed to have and would see me in 3 months. We walked out of his office and tears welled up in my eyes at those three little words. PROLONG MY LIFE? Seriously? After everything I already survived, now I was going to die from Lupus? I was such a wreck that Jess has to drive. I just kept on crying and crying thinking about those 3 words. Finally Jess looks at me and says “Mom, calm down. Isn’t that what all medications do? Prolong your life?”
Hello…REALITY CHECK…She’s right and I am already taking a host of pills to “prolong my life”. What’s one more? So we both took a deep breath and decided to face it head on together. We went to The Lupus Foundation of America and the Alliance for Lupus Research on-line sites to gather the real info and hear from others what life was to become. Lupus is so much more than anyone could ever imagine.
Here are the facts from The Alliance for Lupus Research:
Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.
At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission.
There are several kinds of lupus:
· Systemic lupus erythematosus (SLE) is the form of the disease that most people are referring to when they say “lupus.” The word “systemic” means the disease can affect many parts of the body. The symptoms of SLE may be mild or serious.
· Discoid lupus erythematosus is a chronic skin disorder in which a red, raised rash appears on the face, scalp, or elsewhere. The raised areas may become thick and scaly and may cause scarring. The rash may last for days or years and may recur. A small percentage of people with discoid lupus have or develop SLE later.
· Subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. The lesions do not cause scarring.
· Drug-induced lupus is a form of lupus caused by medications. Many different drugs can cause drug-induced lupus. They include some anti-seizure medications, high blood pressure medications, antibiotics and antifungals, thyroid medications, and oral contraceptive pills. Symptoms are similar to those of SLE (arthritis, rash, fever, and chest pain), and they typically go away completely when the drug is stopped. The kidneys and brain are rarely involved.
· Neonatal lupus is a rare disease that can occur in newborn babies of women with SLE, Sjögren’s syndrome, or no disease at all. Scientists suspect that neonatal lupus is caused in part by autoantibodies in the mother’s blood called anti-Ro (SSA) and anti-La (SSB).
More information on The Alliance for Lupus Research or Lupus can be found at www.lupusresearch.org.
It took a while for it to sink in for me and my family and friends. Most didn’t know anything about the disease but they knew I just didn’t feel good. I continued to take my meds, have tests done every couple months and see the Rheumatologist frequently. We had to coordinate with my team of doctors since I had other issues going on such as the stage 3 kidney disease. And since I was also being treated for high blood pressure I now needed a Cardiologist too. On top of that, the lupus medication can cause macular degeneration where you lose your sight so I had to get an eye specialist too. I am sure my health insurance company hates me at this point!!
It took a little while but now all these appointments flow together pretty smoothly and every doctor is aware of everything that goes on because they all get a copy of the results/reports. I love my doctors and am grateful for all they do for me.
I also have an amazing family and friends that help me and keep me going. After my diagnosis sunk in Jess signed us up for the Lupus Loop in Scranton. It was a 5K walk to raise money and awareness. It was overwhelming to see the amount of people participating in memory of loved ones who died from this disease but there were a lot of us there doing it in honor of those that are battling the disease and winning. We got to the end and what a great feeling finishing my first 5K! (One of the good things about lupus walks is that so many of us have it so everybody walks at their own pace even if it takes all day. There is no pressure. That’s my kind of race!) Jess and I haven’t looked back since. We decided that rather than remaining mad and sitting around feeling sorry for myself, we were going to make a difference one way or another. We travel all around doing the 5k walks – even planning our vacations around them. We’ve been to New York many times, Hershey, Atlanta, and even Boca Raton. We have come in at the front of the line as well as at the back. I had to do the Boca Raton walk in a wheelchair with Jess pushing me because I tore a ligament in my knee the week before. But we still did it!
But, I’ve had to learn my limitations. Jess and I went to New York last fall to do the annual 5K walk and for the first time, I couldn’t cross the finish line. My legs just hurt too much and it was so defeating. My two biggest hurdles right now are extreme fatigue and the pain in my legs. So I have had to learn to do things a little differently. I may have to be a cheerleader at the walks instead of a participant but I will still be there. I do the laundry sitting on the floor. I vacuum sitting on the floor. I sit on a stool to cook and bake. I have to nap at lunchtime and when I get home after work. I am never not tired. (I have to say no to a lot of things especially at the end of the day – so if I don’t come out or I turn down an invitation, please don’t be offended. I am there in spirit but by the end of the day my body says enough and I have to rest.) But life is good – different but good.
If you or someone you know has a chronic illness – not just lupus, please check out “The Spoon Theory” at this link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory. It is a great explanation of what day to day life is like when you are sick.
Life for us has definitely changed but mostly in a good way. We have met so many awesome people on this journey. Jess keeps coming up with ideas to raise awareness and I keep going along with her. I feel like we are the Lucy and Ethel of the Lupus community. We have a lot of fun and shed a lot of tears but at the end of the day I can go to bed and know that we are doing something positive and making a difference even if only in a very small way. Last year we did a Tricky Tray and raised $3800 for The Alliance for Lupus Research and we are currently preparing for our second one in a couple weeks. The more we do the more we find out how many of our friends and neighbors either have Lupus or know of someone battling the disease. It’s amazing how many people are affected yet so many have no idea what it is. So Jess and I are determined to change that. We just recently started a charity called Lupus, Lynns, and Hope and you can check out all the things we are doing at www.lupuslynnsandhope.org.
I know without a doubt that God is still holding my hand (and Jess the other one) on this journey and I am right where I am supposed to be. I may have Lupus and I can’t do all the things I used to do but my life is good and I’m am very blessed. In spite of the challenges, my life is fuller now and I am very grateful for every single day. We have made it our goal to help others, be positive in whatever we do, and try to make a difference somehow every day. I’ve grown in my faith and I’m not afraid of tomorrow no matter what it brings. I am not alone and everything will be okay.
My name is Debbie Szmyd and I have Systemic Lupus Erythematosus (SLE) and this is my story.
I’m calling my story “the long road” for a few different reasons – My journey with my health has been a very long and often scary road; My journey with Lupus has had a lot of ups and downs and also many blessings; And finally, since I am a “glass half full” kind of girl I am looking forward to road ahead of me no matter what it brings.
First and foremost I have to thank God for being with me and holding my hand every step of the way on this roller coaster of a life. Then I have to say that I am eternally grateful for my daughter and best friend Jess. She truly has been a lifesaver to me so many times and many days I would not get out of bed if not for her encouragement. I am thankful for a wonderful husband who fought with doctors and hospitals and made sure I was getting the best care possible and I am thankful for the world’s best family and friends who make this journey less scary and they make me smile more often than not.
Turning 50 this year was a good time to look back and reflect on all that has happened and how I got here and my hope and dreams for the future. So with much encouragement from Jess (my rock!), here is my story…
Once upon a time there was this princess…No wait… that’s Cinderella’s story not mine. Hehe
Anyway… I know it’s a little long winded but to truly get to know me and why my brain works the way it does, you need to know my life before my lupus diagnosis.
Growing up a twin is a pretty cool thing but as a kid it would break my heart and be so hard for me to understand why my brother was so sick with allergies and asthma and I wasn’t. How can one twin have all these issues and the other not? He eventually outgrew most of the issues with both and life was good and now he’s well and I’m not. Somewhere in my thirties I started having terrible problems with infections in my body – sinus infections, eye infections, and infections in my teeth constantly and kidney stones and high blood pressure too. This went on for years.
On May 9th, 2003 my life changed forever. I took my mom to the hospital for her gall bladder surgery. I got her all checked in and when they took her in, I checked myself into the emergency room for another bout of kidney stones and life as I knew it was no more. After a bunch of tests the doctors told me that I did have kidney stones again and was also pregnant and had a watermelon sized fibroid tumor in my uterus. My OB/GYN said the baby would not survive and the best I could hope for was an early miscarriage. As you can imagine, I was traumatized, mad at God and questioning why me? I did have a miscarriage with a lot of complications.
I hemorrhaged profusely. There was blood everywhere – so much so that the emergency room doctor was freaking out. My blood would not clot. That night I was placed in Intensive Care with a less than good prognosis. I don’t remember too much of the next day. I do remember how awful I felt that I was putting my daughter thru this. Early the next morning my husband, mom, and Jess were called in to say goodbye. My kidneys had shut down and the doctor said the rest of my organs would probably do the same. Everybody was crying but I didn’t know why. Nobody told me I was expected to close my eyes and die.
Later that day, I was rushed to a different hospital – one that specialized in kidney issues and put in intensive care. I spent a month there fighting to get better but being prepared that I would have to be put on a transplant list. I had a wonderful team of doctors and nurses taking care of me and acting like my cheerleaders every time my bloodwork came back. It broke my heart to see the fear and pain in my daughter’s eyes. She was so young and had to worry that I would die. I would get so excited every time she came in that I vomited every single time I saw her so she became afraid to come see me for fear she was making me sicker. I honestly didn’t know how dire the situation was until my Mom brought a lawyer to the hospital to do my will. Then it hit me.
I made up my mind that I was not going to leave my child motherless. I’ve always had faith in God but began, as most people do, praying my heart out. I talked to God all day long every day and made all kinds of promises. My friends and family and my whole church was praying for me. God heard us because very, very slowly I started to get better. I had 6 blood tranfusions to help with the massive blood loss and began having kidney dialysis. I pretty much spent most of that summer in various hospitals constantly fighting to get better. (Believe me, I could write a book about everything that happened to me just in the hospitals.)
Finally I was well enough to go home and continue with dialysis on an out-patient basis. My body had to heal from the trauma that it went thru the last couple months and then a few months down the road I would go back to Philly for a hysterectomy to remove the fibroid. Life was getting better. God had heard my prayers.
I get settled in at home where my daughter had to become the Mom and take care of me. This shouldn’t happen this way. It was so much for her to deal with and she would cry that she wanted me back the way I used to be. I felt so much guilt for getting sick and putting her through this. I could not stand up without wanting to pass out so she really had to do it all.
A few weeks later I kept having trouble with my dialysis catheter. It kept getting clogged and wouldn’t work. My Nephrologist ran some tests and my kidney function and blood numbers had improved so much that the catheter could be removed and I wouldn’t need dialysis any longer. He removed the catheter and sent me on my way. What a good feeling – kidneys were functioning enough to get by and I was slowly becoming Mom again.
Then I got a blood clot in my neck and shoulder and was back in the hospital for another week. Turns out that was why my catheter stopped working. In a few months I went from my blood being too thin and almost bleeding to death to having a clot and having to take blood thinners. The clot dissolved and I was finally well enough to travel back to Philly for the hysterectomy. Surgery went well and I was back home and doing much better. The never ending year was finally coming to a close and I was still thanking God for giving me another chance. As I got stronger so did my faith.
After while I came across the journal my husband had kept of everything that happened to me that year and the depth of what I had been through and I believe with all my heart that it is a true miracle that I am here and just celebrated by 50th birthday when I came so close to not reaching 40.
That being said, life has certainly not been easy since then – the kidney failure left me with weak kidneys and Stage 3 kidney disease so I have to be very careful and take good care of myself. I do not drink alcohol except for maybe 2 glasses of wine a year and I research everything to do with my health that could harm my kidneys. I have a ton of blood work done to keep an eye on them. I know what all the numbers mean and I carry a copy with me. My kidney health is on my mind 24/7/365 because I will do what I have to do to keep them functioning.
The next nine years were a constant battle with health issues – so much so that I referred to myself at the “Murphy’s Law of Medicine”. I developed acute Carpel Tunnel Syndrome in both wrists practically overnight. I was in constant horrible pain until I went to an Orthopedic doctor and had surgery on each wrist over a 2 year timeframe. I had constant sinus infections and had to have Sinus surgery. The tooth infections kept coming and I had to see an Endodontist to re-do all the work I had previously done and to have oral surgery to remove a cyst from my cheek. Then Christmas night 2008, I had bronchitis again and coughed so hard I almost passed out. Luckily I did not but unluckily I felt something pop/tear and had to have hernia surgery. It was never ending and very frustrating. So now I have a general doctor, a nephrologist for the kidneys, and orthopedic doctor for my wrists, a dental specialist for my mouth, an Otolaryngologist for my sinuses, and a surgeon for my abdomen. I could barely have 3 straight weeks without a doctor’s appointment. But after surviving 2003, I learned to roll with the punches. I developed a high tolerance for pain, kept up with all my appointments, and had faith that I wasn’t alone and I was going to be just fine. Jess spent a lot of time angry that everything kept going wrong for me and I had to spend so much time suffering and needed surgery every year. She just wanted a normal Mom. I kept telling her that I would much rather be the one sick than any of my loved ones because I can handle being sick but I couldn’t handle them being sick. But the question that was always on my mind was “why”. Not why me but why is so much going wrong?
Eventually things calmed down and seemed to be fairly normal for a little while. Then I started being absolutely exhausted all of the time and my body started to hurt more and more and more. I could not set the dinner table because I could not pick up two plates at a time. I could not lift a full cup of coffee to my lips. I learned to deal with it and put off doing anything about it until the pain became unbearable. I went to my regular doctor to be tested for Lymes Disease. The blood work came back showing I tested positive for Anti-nuclear antibodies and it appeared to be systemic. I needed to see a Rheumatologist immediately.
And so begins the next chapter…my journey down Lupus lane…
I am a Lupus patient and this is my journey!