One of the things I try to accomplish with this blog is awareness/education. Since being diagnosed with CIDP I've been presented with a unending list of questions (from my own head, from doctors, from friends and family). It's funny, usually having a diagnosis brings answers, but this diagnosis is so rare that it seems to have brought more questions and confusion than anything else! The beauty in this is that we all get to learn together, and maybe teach each other along the way! I was sent home from the first hospital that I was admitted to because they simply didn't recognize my disease and couldn't figure out what was wrong. If spreading awareness about CIDP helps even one person avoid that terrible situation, then it's more than worth the effort.
After completing my second "loading dose" (a five day high-dose treatment) of IVIG, many have asked not only how I'm doing, but 'what's next'. "So, are you in remission now? You seem like you're better!" has become a familiar conversation.
The short answer is, firstly, thank you! I am certainly doing much better than I was during my long hospital stay. I am able to walk, function independently, and care for my son; God has been so good! Second, no, I am not in remission. I am still being actively treated for my CIDP. IVIG is a slow moving treatment that continues to work for weeks or months after the initial dose, meaning that it's still treating me at this moment, even though there is no IV in my arm. I make a conscious effort each day to get dressed in real clothes and attempt to fix my hair. As my dear friend would say, just because I am sick doesn't mean I can't look fabulous!
"Whenever you fast, do not put on a gloomy face as the hypocrites do, for they neglect their appearance so that they will be noticed by men when they are fasting. Truly I say to you, they have their reward in full. But you, when you fast, anoint your head and wash your face so that your fasting will not be noticed by men, but by your Father who is in secret; and your Father who sees what is done in secret will reward you." - Matthew 6:16-18
Whether remission exists for CIDP patients is dependent on who you ask. Some will say no, that remission with CIDP is not possible. Others say that if you have gone 1 year without any treatments you are considered to be in remission. In the spirit of hope, I will go with the second opinion and consider myself in remission when I have not needed any treatments for 12 months. Right now, we're a long way off from that, so I will continue to fight!
The other R word with this disease is relapse. As I've written about before, there is a very real possibility that I will relapse after this sweet girl is born. My doctors are doing everything they can to prevent it, but ultimately it's up to my body and totally out of my control. A relapse could mean many things; it could be as simple as starting to feel the same symptoms I had before (returning muscle weakness and pain, numbness and tingling, etc.), or as complicated as sudden severe weakness that lands me in the hospital again unable to care for myself or my sweet babies. In talking with other mamas who were pregnant with CIDP (there's a small army of us out there!), every body is different, and each of their experiences was different. So we really have no idea what my relapse (if it happens at all) will be like. The most we can do is prepare for the worst, and pray for the best. My greatest desire at this point is simply to go home with my new baby, and not need to stay in the hospital alone past her discharge. That would truly break my heart, but I know God will give me the grace to handle it if that is what He requires of me.
So, to recap: No, I am not in remission, and I may never be. We are unsure of how long I have before a relapse…could be weeks, months, or (God-willing) years from now. We are preparing for the worst, but continue to pray for the best! I hope this helps shed some light on my current situation; please feel free to reach out and ask me any other questions! Comment below, or drop me a note by contacting me above…I would love to hear from you!
Today is a good day, and I will continue to fight and choose joy!
"You make me brave, You make me brave
You call me out beyond the shore into the waves
You make me brave, You make me brave
No fear can hinder now the love that made a way" - Bethel Music
