Back in December I wrote a blog post about being diagnosed with scleroderma/systemic sclerosis. I wanted to just write a very brief update on what has been going on with all of that.
Last week I had an appointment with my mom’s rheumatologist in Wisconsin. He had graciously read my labs and offered to meet with me to discuss the results, perform a few more tests, and work with me after. I was so thankful for his offer and happily met with him!
He sat and spoke with me for quite some time about my previous labs, the onset of my symptoms back in August, my current meds, and all the questions I had. He informed me that my labs were not especially convincing to him and he wasn’t sure why certain labs were never performed. He offered to re-run some tests and do a few new ones. Of course I was willing!
Well, my labs came back with flying colors…just not really in the direction we were hoping. A couple of the results were greater than or equal to the highest possible number. So that was discouraging. Then two other labs came back low that are usually associated with lupus.
While the labs didn’t come out as I had hoped, I was thankful for more clarity. He did say that he didn’t feel comfortable giving me an official diagnosis. While my labs seem to strongly indicate an auto-immune disease (specifically Scleroderma) I have none of the clinical signs/symptoms…just very general symptoms that tend to show up in people of all auto immune diseases (chronic pain, digestive complaints, joint pain…etc). So I will meet with him again in the summer and will likely keep him has my rheumy for future follow ups as long as it’s possible for me to make the treks to Wi.
So what’s the good news?
First and foremost, I have hope. While there is no cure for auto immune diseases and I may go through this for the rest of my life, this isn’t forever. I was talking to Josh and reflecting on how long 9 months of pregnancy felt and how the pain of labor felt unbearable. But the labor pains encouraged me that a new and better season was on its way. This auto immune disease may cause me some problems and may limit me…but the pain reminds me that Heaven is my true home and this season will pass away eventually and will be nothing but a memory and I’ll be able to say, “that was tough! It felt like it was going to never end but it did! Glad that’s over!”
I don’t have any clinical symptoms. While I know my numbers are high, it doesn’t have to mean that my disease will be more severe. A loved one told me that she has friends whose labs are just like mine and yet they rarely experience symptoms aside from a little pain here and there. That may very well end up being my story.
I have a great support system. I have friends and family who genuinely care for me. I am so lucky to have that. I think about people who go through these illnesses alone or as a single parent and how much more difficult it would be.
I also feel vindicated. I had plenty of people tell me that I was crazy and it was all in my head. That was pretty annoying and difficult to manage. The one benefit of really telling labs is that I can point to something and say, “see! I knew something didn’t seem right! I kept my nose to the ground and didn’t stop until I found some answers!” How freeing it feels to not have to listen to those who would only bring you down!
I have some wonderful prescriptions that are helping to manage my symptoms! I told my doctor just this week how thankful I am for one in particular. I had lost so much weight during such a short time. I cried and looked in the mirror recognizing I was just a shell of the person I had once been. I felt weak and frail. In that moment I promised myself that I’d never complain or call myself fat again if I could just get healthy and keep food in my body. I am happy to report that I have gained almost 20 pounds from last summer/fall…over half of that being in just the last few months. You know you needed to gain weight when you put on 20lbs and don’t need a new wardrobe!! My pants are a little more snug, of course, but they button up fine so I’m satisfied!
We could still use your prayers. I have my very bad days when I cry as I imagine what could become of my body should this disease really get a foothold. I’ve seen the pictures and it can be scary…and there’s no cure. The signs are visible. My disease would be out in the open for everyone to see. There’s not a treatment for scleroderma…just a constant attempt to manage symptoms. I think about taking pictures at my boys’ weddings someday and having my disease as a constant reminder to them in a photograph. I think about if this disease should attack the wrong organ or body system and should I die and leave the boys behind… What would happen to them? How would they handle it? There are many worst-case scenarios that can plague my mind. So we need your prayers. Pray for the boys, for me, for Josh, for my family and friends, and doctors.
The Bible tells us to take every thought captive…it tells us to renew our minds. The Bible says to only think on things that are pure and noble. We don’t need to worry. So please pray that God would help me to take control of my thoughts…and make Himself the commander of all that goes in and out.
Pray for my mom. I know how hard it is to watch my kids battle so much as a cold. I hate watching Emery struggle with CVS and I am constantly on the hunt for how I can help him. I also think of the guilt I’d experience if the boys were to ever develop an auto-immune disease. I would feel like it was somehow my fault and my crummy genes. But those things aren’t true. There’s nothing like the love of a mother and I know she would take this on herself if she could. I know it kills her to watch this happen. So pray for her and the rest of my loved ones who watch on helplessly as they manage both my symptoms as well as their own illnesses.
Finally, pray for a cure! What a happier world we would live in if we could truly find a cure for the many diseases that plague us from cancer, tumors, auto-immune diseases…or even the common cold! What if there were a vaccination that could take these away or keep the symptoms as mild as possible.