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.
I am a Lupus patient and this is my journey!