Carla’s Lupus Story
Carla was diagnosed with lupus 17 years ago. She had 12 good years with minimal lupus problems. She told GiveForward about her journey with this chronic disease and how she stays strong.
“I was diagnosed with Lupus immediately following the premature birth of my son at 11 weeks and 6 days early. Initially, I had substantial kidney and lung involvement, as well as congestive heart failure. For about 12 years, I had very limited problems with my lupus aside from the occasional arthritic pain, skin problems and increased in lung infections. I worked full time and started a business with my late husband in 2009. Following his death in 2011, I developed 11 pulmonary emboli. After changing physicians, more testing was ordered and it was determined that I had many underlying blood disorders common with a Lupus diagnosis that caused my blood clots. In 2012, I was told I could no longer work full time and needed to sell my business which required being outdoors quite frequently as sun sensitivity is a known factor with Lupus. I became increasingly ill with several cases of pneumonia, lupus flairs and an increasing amount of pain. In October, 2012, I sold my business and by January, 2013, I had moved into the basement apartment of my parent’s home. Since 2013, I have had many problems during peak allergy season with breathing and infections landing in the hospital as recent as June and last Fall for 18 days. It was also found through my GI doctor that I had 3 blood clots off my abdominal aorta that would either kill me or require a risky life-saving surgery. In April, 2014, I underwent a 6 hour surgery utilizing my large vein from my thigh to bypass the 2 most significant abdominal blood clots and restore blood flow to my liver and other vital organs. I often say I am very fortunate because I had 12 great years before Lupus tightened it’s grip on my body. I no longer work. I no longer can do many things that I used to could do. I have to be aware of long car rides, flights, and exposure to smoke, toxins such as paint, pollen and places that increase my risk of acquiring a viral or bacterial infection. It truly has changed my life but has given me a greater appreciation for all that I have had in the past and have now as I know many have had a much harder time than I had with no “lupus down time” like the 12 years I had.”
Lupus is an inflammatory disease caused when the immune system attacks its own tissues. There is no cure for lupus, but like Carla said, medications and lifestyle modifications can usually help with the symptoms.
“Due to pre-eclampsia and a failure in the normal treatment protocol, my son was delivered prematurely which is the final treatment for pregnancy induced hypertension. You typically return to normal within hours. I did not get better. I got worse. Then, I began having kidney and lung problems. At that point, the doctors began to suspect there was much more than met the eye. After further testing, and a look at my medical history, it was determined I had Lupus. I was then treated as such and began a recovery that took 28 days in the hospital and another several months at home. I had experience prior miscarriages and some symptoms that were not that severe such as arthritis and odd infections but never had really given it much thought.”
Carla also told us about her biggest challenges and the hardships she’s had after she being diagnosed with lupus.
“Initially, finding a physician that I felt comfortable with in treating what would be a long term disease [was difficult]. Then, the unexpected. Often breaking plans because of crazy, odd illnesses. Just not feeling “good.” Going from feeling great in the morning to feeling horrible by afternoon. Fatigue and pain management are challenging. You don’t always feel bad. You don’t always need pain medication. Figuring out when you do and managing those two things have been really huge for me. It took me a long while to learn to pace myself, and honestly, now I still overdo it sometimes when I feel really well. The hardest thing was hearing people say things like “you don’t look sick” or having a physician say “boy you sure don’t look like your chart.” The looks when you get out of your car looking ok when you are having a bad day and have to park in handicap parking. Explaining this to my son has been hard because he never knows what to expect and that unexpected part of the disease, I know, has taken a toll on him.”
Despite all these negative things going on in her life, GiveForward and her community’s support have been important and a big help in her life.
“I have been very blessed with a wonderful, supportive family and friends. Most of whom after the several years of this disease and friendship, have come to understand the good and bad. I’ve not been on GiveForward very long but I find it very inspiring to see those facing a much worse situation than I and coping with it in such a positive manner and with a smile on their face.”
Carla also had some advice and motivation to offer to others who are struggling with lupus.
“Be an advocate for your care. Change doctors if you must. Always feel like your doctor listens to you, your concerns, those of your family and even is open to conversations with other physicians. Find a physician that also stays up to date on the ever changing medical environment and research. Be honest when you don’t feel well – honesty with yourself and others is crucial. It’s ok to have a bad day, just try not to turn tomorrow into a bad day because today was bad. Find a happy medium between your life before Lupus and your life after. Maybe you can’t go to the baseball game at 1:30 but you can go to the 7:30 game. Sometimes you just have to say no. There will be people who will never understand. There is life after a Lupus diagnosis. Learn to manage your stress as best as possible. I firmly believe the stress of my life the year prior to my Lupus tailspin was a contributing factor. Stress is as bad for you as exposure to other situations that can cause Lupus flairs and we now know that stress has major effects on your body. If you have Lupus, it’s even more important that you manage your stress! I know it’s easier said than done sometimes to manage your stress levels when you have life still going on around you…but you have to really try to do this. And, explain your disease to your friends in simple terms so that they can better understand what you go through.”