My name is Jamie Leet and I am walking to End Lupus!
My journey began back in 1986 on Halloween night. My mother woke in the middle of the night to find me not breathing, my heart had stopped, and I was blue. I was given CPR and came back but that is the day I died. I often wonder sometimes with all my problems and health related issues if I was really meant to just die that night. Since that time growing up I had 3 other seizures and grew out of them by 13 years of age. In 1997 I had my first child that sprung up a lot of protein in my urine so the doctor thought it would be a good idea to get a Kidney Biopsy done to just check. Little did I know this was the beginning of being sick the rest of my life. I was diagnosed with IgA Nephropathy and he also mentioned in the biopsy that he suspected that I had Lupus. I was put on BP meds and a low sodium, low protein diet. He then told me if I don't get my protein down then my kidneys would fail in 5 years. I was determined from that moment on to take care of myself and do what I needed to keep my kidneys going. As the years went on I had a series of UTI's, pneumonia, spleen was swollen once, had pancreatitistwice, gallbladder was taken out along with the appendix, and I had my right fallopian tube taken out in an attempt to get pregnant. I also have had three miscarriages which I hold in my heart almost on a weekly basis. In fall 2014 I got a job that required me to lift a ton of weight at work and in turn my body hurt really bad. I never thought anything of it but as months past I knew I needed to get my arm looked at because I couldnt hardly lift anything at all. I was referred to a Physical therapist to get looked at and in January of 2015 she told me that I didn't have a problem with my elbow. She suspected that I had Rheumatoid Arthritis and told me that I should get a Rheumatologist. So I made an appointment with a specialist and my results came back that I had RA. She put me on Plaqunill and Methotrexate immediately to stop further damage. She also asked me when I got the rash on my face and I told her that I had had that for a long time now but it comes and go with my nerves. She said that she had a suspicion that this could be lupus. Again in my dealing with doctors this Lupus thing had come up twice. We did an ANA and it came back negative, so we moved on but it was always there, Lupus, in my head. I lost a lot of weight being on methotrexate as some of you call "chemo" I was so sick for about 48 hours after I would inject .8ml. In 2016 I moved to Georgia and got a new Rheumatologist. I still had problems with the MTX so my new doctor decided to run more tests to see if I had Lupus once again. Negative again and since that time I have had numourous tests. I have seen every doctor that is imaginable, at one point I had a Nephrologist, Rheumatologist, Oncologist, and General Practicianer. Nobody could figure out what I had so my Rheumatologist decided that Humira would work best for me and RA. At first it worked and I went till May of 2017 on Humira and then one day I woke up with hives all over my body. It was decided that I was allergic to Humira so she sent me to yet another doctor, Dermatologist, and I started on Immunotherapy to treat my allergies. I spent 3 1/2 months with chronic hives, blisters, and bruising. My Rheumy decided to put me on Enbrel after I evened out with the hives and it was okay but my God those shots hurt so bad going in and by November of 2017 my Rheumatologist decided that she thought I had Psoriatic Arthritis. I was done!! i was sick of doctors and I stopped all my meds. I was defeated and I knew that this Rheumatologist wasn't listening to me and my symptoms and she could never decide what I had but treated me with meds that could cause damage to my body. I just gave up and started to look at my labs, tests, and reports and came to the conclusion that I needed a doctor that not only would listen to me but would do what is right and find out what the heck was going on with my body. I looked up the best Lupus doctors of Atlanta and Elizabeth Butler was the first on the list so I went to her page. She was part of the Lupus Foundation, graduated from Yale, and was affiliated with Johns Hopkins. I booked an appointment right away. In the meantime I was going round and round on my RA. I hurt so bad and was at my last rope for treatment options so I decided to get a Cardiac Clearance in case my new doctor would put me on Remicade. I was ready I need the pain relief in the worst way possible. I work for a cardiac group so one the doctors I work for told me it was a good idea to have my ducks in a row and get that clearance before I went in so we could start treatment right away. I booked my cardiology appointment and did all the tests. Doctor comes back to the room and tells me "Okay Jamie don't freak out on me but there is something to that chest pain you get.. (Oh yeah did I tell you all I had been having chest pain for about a month with night sweats and pleurisy? Well I did....) Jamie you have Moderate Mitral Valve Regurgitation and high blood pressure." I was beyond shocked and so now I have to get an echo done every year to make sure my Valve is ok. I still think to this day that all the meds I was on for RA caused this but thats neither here nor there. I go to my NEW RHEUMY and she orders more tests. This time instead of the regular ANA she orders an AVISE test, she did blood work, and she did x-rays. I leave her office and have a month to get all the results back... Its March 2018 and I go in to Butlers office to get my results. I looked at David ( thats my friend, soul mate, and other half of what makes me strong) and say in the car on the way. "David I know I don't have Lupus but I am kind of relieved that she went that extra mile that no other Doctor had ever mentioned to me. I am so over thinking that I have Lupus and we will fight this RA head on with Remicade." I was ready to end the Lupus diagnoses and ready to lay it to rest. Dr Butler walks in and immediately opens tests results...."Jamie you have Lupus!" I don't say anything..... I know my eyes got huge and she says back to me well you have mild Lupus. Do you plan on becoming pregnant? I tell her no..... Still shocked at what that first sentence was. "Jamie whats good is you have no involvement except for the arthritis. Some people have organ involvement but you don't." I then told her my new diagnoses of Mitral Valve Regurgitation and she looks at me with wide eyes.. You know what I am saying if you know her... and she said back to me, "Okay well you will get this checked out with your Cardiologist every year and you have Lupus with Heart Involvement..." In 2018 the month of September I was also diagnosed with a protein that will eventually be Multiple Myeloma. So along with a Rheumatologist and Cardiologist, I now have to deal with seeing an Oncologist to check my numbers every 6 months and make sure that my MGUS doesnt ever turn to cancer.
My story is so long and for that I am sorry to get so detailed. This is the beginning of a longer story yet to come though. I want to educate everyone that if you think you have Lupus keep being your own Advocate. If I was not my own advocate I never would have gotten the diagnoses of Lupus and find out that all these years I was wrongfully diagnosed with RA. I have arthritis due to Lupus and Heart Involvement. I know my story isn't as horrific as some but it is so real. My symptoms involve joint pain, fevers that come and go, malar rash, chest pain, short of breath, fatigue, tingling legs, pleurisy, and the list goes on. I love the story "The Spoon Theory" Its so true, and everyday I wonder how many spoons I have left. Thank you for taking the time to read my page, support my team, and help END LUPUS!
Love you all with all my heart and soul, even when I'm too emotional to express that. Love you, Thank you, and God Bless
I’m Walking to End Lupus. Join Me?
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in [city] to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!