Life is a balance between letting go and holding on
Life is a balance between letting go and holding on
My Rare Disease Confession
“Here I go again,” I mumble to myself as I hit “join” on another support group. It was 11 years ago that I tested positive for RheumatoidArthritis (RheumatoidArthritis). When I say I tested positive, RheumatoidArthritis was found in my blood which means that I carry the blood antibodies for RheumatoidArthritis. RheumatoidArthritis can be classified in two ways, seropositive and seronegative. “Sero” representing blood. If you are reading this and do not fully understand RheumatoidArthritis please know that just because a patient doesn’t test blood positive for RheumatoidArthritis that doesn’t mean they do not have it or do not have it as badly as a blood positive patient. Seronegative patients battle arthritis and inflammation just as real as seropositive. Actually, being seropositive like myself in my opinion is a little easier because our diagnosis comes a bit quicker than those who are seronegative. And physicians outside of our Rheumatologists understand our RheumatoidArthritis diagnosis because they can see it in our blood. Oftentimes seronegative patients end up having to educate their non-Rheumatologist physicians.
It was 3 years ago that I tested positive for SCL-70 which is a blood antibody associated with a RareDisease called Systemic Sclerosis or Scleroderma. Scleroderma unlike RheumatoidArthritis is not a diagnosis given from a blood antibody alone meaning just because you have the blood antibody doesn’t mean you have the disease. For one to be diagnosed with Scleroderma one must show symptoms other than a blood antibody. So for me, we called my SCL-70 blood antibody finding “SCL-70 positive” for a while after rerunning it to make sure it was not a false positive. One might question why my Rheumatologist decided to rerun my blood antibodies since I was already diagnosed with RheumatoidArthritis. I had developed lung issues, GI issues and skin issues that prompted the re-run of my blood antibodies. RheumatoidArthritis can cause those issues but my increasing issues were not presenting like RheumatoidArthritis and I was already taking a DMARD and a biologic, which are RheumatoidArthritis medications.
It takes a very experienced Rheumatologist to know what to look for when it comes to diagnosing Scleroderma and takes an experienced Rheumatologist to treat it as well. When my blood antibody for SCL-70 came back positive, I watched as my Rheumatologist called in a colleague to consult on treatment and check my nail capillaries. In patients with Scleroderma, the nail capillaries (only seen under magnification) have changes that are consistent with a diagnosis. It was then that I felt maybe this was a significant step in my autoimmune disease journey. And as my medication changed to treat my lungs and skin, which seemed to be taking the biggest hit, I heard the pharmacist say “Elaine, I am so sorry.”
For about a year I was angry. I had already been living with one life impacting autoimmune disease, why in the world would I be given another and one even more life impacting than what I was already dealing with? I was angry that I had followed all the steps to treat my RheumatoidArthritis, to live the best quality of life, and I still got something “worse” which is what Scleroderma felt like. Autoimmune disease is not a competition but at that moment, in my anger, it felt like it was. I felt angry every time someone asked me if my RheumatoidArthritis was doing better or asked why my RheumatoidArthritis medications weren’t working like they had before.
Then the second year came, that was the year I felt denial. I continued to take Scleroderma medication daily but told myself “if I don’t think about it, it will go away.” I worked diligently advocating for RheumatoidArthritis awareness something I had already been doing. I didn’t speak much about my Scleroderma issues. And each time something would pop up I would just blame RheumatoidArthritis like I had before the SCL-70 had been found. I reverted back to calling my “other” issue “SCL-70.” I quit asking my Rheumatologist if the SCL-70 blood finding was just “a mistake” and decided in my head I would just ignore it not bringing it up too much. In a sense it was ignoring the elephant in the room. Please don’t think my Rheumatologist was ignoring it, he is a better physician than that. He would often say “we need to watch for Scleroderma Renal Crisis” or “that is your SCL-70 overlap diagnosis.”
Well, ignoring it didn’t work because in the last year I have realized that my Scleroderma diagnosis is very real and very life impacting. Often times my friends and family ask why my RheumatoidArthritis medications are not working as effectively as they did before or why I seem to be getting sicker each month. Friends and family, perhaps I have not been totally honest with you so this is my honest confession. It isn’t unusual for a patient to have more than one autoimmune disease, they often come in pairs or multiples. I have tried to keep my Scleroderma diagnosis private since I have always been scared to share my diagnosis for fear my friends and family might think “she has another thing.” But, I do…I do have another thing. This is not attention seeking but to say that just sometimes advocates don’t share their whole story.
So as I hit “join” on another support group, I am taken back to being a newbie at things. Learning all I can about Systemic Sclerosis and how to best gain quality of life with my new diagnosis. I truly believe the saying that “knowledge is power.” I am no longer angry or in denial so now is my time to speak openly about Scleroderma and be an advocate. My name is Elaine Wiley, I have RheumatoidArthritis and I have Scleroderma too. #Scleroderma #RheumatoidArthritis #RheumatoidArthritis #ChronicIllness #RareDisease
I’m new to The Mighty. I didn’t even know this existed! I have Systemic Scleroderma with Pulmonary Fibrosis and other issues related to those two major illnesses. I have two children that have seen more hospitals and doctors offices than most adults. They know how to change my oxygen hoses and used my IV poles as scooters when they were little. I am here to get advice and ideas on how to live with this disease. I’m happy to give advice to anyone who is living with or recently diagnosed this chronic disease