Lupus, formally called systemic lupus erythematosus (SLE), is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body.
- What is your name?
My name is Marcia F. and I am 76 years old. I have a wonderful husband named Jim and 7 children and 9 grandchildren. I am a retired Preschool Teacher and Director. - Where are you from?
We live in Rockton, Illinois - Please share your story of being diagnosed with both Lupus and ITP. How did it all begin for you?
At the age of 65, during my medical physical, my platelets were too low and my primary dr. sent me to a hematologist to see what was wrong. After extensive testing, he diagnosed me with ITP. Then he referred me to a rheumatologist as I had tested ANA positive. The rheumatologist did more extensive testing and diagnosed me with Lupus, all within a couple months! I was fortunate, at first, that I didn't need any meds, as I had no signs of Lupus, and my platelets hovered between 50,000 to 80,000. But in 2017, I got a triple whammy! I was diagnosed with triple negative breast cancer and had to have surgery, chemo, and radiation in that order. Unfortunately, the chemo knocked my platelets down to 13,000 and I was sent to the hospital. They tried platelet transfusions, dexamethasone, and finally 60 mg of prednisone, which got me through the 4 months of chemo, but not without horrible side effects of not sleeping, mood swings, and weight gain. But I'm very thankful and proud to say that I'm a 7 year breast cancer survivor! When they tried to taper me off prednisone after the chemo, I could no longer maintain even 50,000 platelets, so they kept me on 5 mg of prednisone which did the trick until just recently.
Then I started having some Lupus symptoms, including hair loss (which is very hard since I just had started growing my hair back from the chemo), the famous butterfly rash, which I try to hide with makeup several times a day, Reynauds Syndrome (your fingers turn white when cold), fatigue, which I had also experienced with ITP, and the hardest to deal with is my Thyroid Disease, starting with Hashimotos, but then going all the way to the other end of the spectrum, with Grave's Disease. My endrocrinologist is trying hard to regulate me with medication, but I had to stop exercising for awhile as my heart rate was too high, and that was really hard for me! I also have a really hard time getting a good night's sleep, having to depend on melatonin most nights. But I know that exercise is a great stress reliever, so I continue to do golfing, swimming, walking, and cardio drumming. I would be a basket case without exercise! I also do meditation a couple times a week to help with stress! Having both ITP and Lupus, there are some days when you are so fatigued, that all you can do is sit, and I always have a good book on hand. Baking is another one of my hobbies, it's also a stress reliever for me! - What role has PDSA played in your healthy journey?
I am very thankful for the PDSA. I actually found them on the internet while I was researching ITP and went to my first PDSA conference in 2018. I learned so much there and finally could be with people who understood my ITP. I attended a Facilitators meeting and knew I wanted to start my own ITP Support Group, so in Jan. 2019, I started an ITP Support Group in The Villages, Florida, where we spend the winters. We are still going after 6 years! I'm grateful that the PDSA supports my meetings on Zoom, since Covid, We have monthly meetings, and they help me more than I help them! I also have had 4 fundraisers for the PDSA, two "Putting 4 Platelets", and two "Drumming for Platelets!" I have raised over $5000 for the PDSA and hope I can do more! The PDSA has really saved my life, helping me find drs that specialize in ITP, always improving my knowledge of ITP, through their magazines and conferences, and a shout out to Jody Shy, who always helps me with my monthly meetings! - What is one thing you’d share with a newly diagnosed patient? This can be a tip, important reminder, inspirational quote, or something else you feel compelled to share.
A tip I would like to share with a newly diagnosed person with either ITP or Lupus, or both, is to join a support group. You can learn so much by listening to others talk about their experiences, and treatments. And it's so helpful to just be able to share your experiences too! Lastly, I would like to add my motto that I follow: My faith in God has helped me get through the darkest times, try to exercise as much as you can to relieve stress, or meditate, eat healthy, and if you are too fatigued to do anything, find a good book to read! And don't forget, its Ok to rest!
Interested in sharing your journey with ITP? Submit your ITP story here. (Full names and contact information will not be shared).