autoimmune, part 3

Thursday, October 18, 2012

The last-for-now installment of my journey through a chronic autoimmune disease…here you can find part 1 and part 2.


…Every day for the rest of my life, I will take a pill, sometimes two, depending on the current dose I need to keep functioning. There’s a humble grief in that. My disease is not particularly life-threatening in the physical sense. The cardiac issues were scary, but there’s much less danger now that I’m hypothyroid. It steals the life straight out of me just the same. When my thyroid isn’t functioning up to speed, my hair and my fingernails stop growing, my skin dries up, my digestive system stops working, my brain doesn’t function normally. Sometimes I think this must be what it’s like when you know your body is shutting down and preparing for physical death, only in my case it occurs in slow motion.

I was too sick for a long time to process through all of this. I’ve only recently begun to grieve the losses a chronic illness brings in my life. I’ve had plenty of medical ‘issues’ in my life, this just felt like one more for a long time. A permanent dependency on medication, a disease that drastically affects my mental state, years of my children’s lives that I barely remember. The thought that I will never be the healthy adult that I imagined I would be. Those are losses. They are real. They are worth grieving. My life has forever changed.

I still battle pride. Admission of weakness, acknowledging need: those come easy in the trusted embrace of a loved one, but much harder when in the presence of ‘others’. The humility of being bound to a medication for the rest of my life still stings. Surrender doesn’t come easily to me, and this is just one more area where I’m being forced to learn it daily.

I now battle fear. I have hideous nightmares about losing all of my hair. I check the bathroom mirror in the middle of the night, making sure my nightmare wasn’t real. I fear the future. I know that once you have one autoimmune disease, you are much more likely to develop another, so I fear any new symptom or health issue. Pain in my hip? I hope it’s not rheumatoid arthritis. Or maybe it’s the beginnings of multiple sclerosis. It’s just always at the back of my mind.

I still battle an immense amount of guilt over these years. I feel guilty about our finances. I know medical bills are expensive – we have thousands in medical debt. I feel guilty that part of the reason my husband works so hard, works two jobs is because of my health. I feel guilt over the snarky almost-anger that rises up deep in me when I see all the fundraisers for various, more understandable illnesses that it’s so PC to raise money for.

I feel guilty for the burden my husband carried all on his own all of those years. I feel guilty that he did his job and mine too. I feel guilty that my anxiety caused him to miss family events. I feel guilty for making him the brunt of my hugely fluctuating emotions – the depression, the anxiety, the anger, the fear.

I feel guilt and regret and if I’m truly honest, shame, over how I parented (or didn’t parent) my children during those years. All the hours of TV. Will what they remember of me be how much I slept on the couch? I didn’t make them enough cookies. I didn’t play with them enough. I abdicated almost all of my role to Nick Jr. and Wendell. I wish I had been more honest about what life was like for me during the day. I wish I had not allowed Wendell to bear so much of the load.

Shame is the most insidious of emotions. I feel shame that I didn’t deal with this better. What about all those women out there with truly life threatening diseases that have severe pain and just soldier on? I didn’t even have severe pain. I feel shame that I wasn’t woman enough. That I wasn’t selfless enough to suck it up for “the sake of the family”. Was I even Christian enough? Did I choose joy in the face of difficulty? Did I just fall into a pit of self-pity? Why wasn’t I good enough, strong enough, graceful enough, joyful enough…

I choose not to stay in those places anymore. Even as I still battle this illness. It’s not as intense as it was at first, but it’s still a continual war. I get my blood drawn fairly regularly. I haven’t ever been on the same dose for more than six months at a time. This summer brought one of the worst times I’ve had since the beginning. My hormone levels were significantly off. I knew it but didn’t want to admit it. I wanted to pretend it wasn’t happening. When I finally went in, it was too late for a quick fix. Now, almost two months later, I can feel myself finally beginning to feel a little more normal.

This isn’t all over, but I’m living beyond it. I’m better at choosing joy. The rest of my life has taught me a lot about dealing with uncertainty, grief, joy, and pain all intertwined together. I counted steadily to 1000 gifts (and more). I’m learning to see the beauty in the mess. I’ve seen redemption in the hearts of my children. I am being healed. I keep watch with my words over this life that I’m living. I am living a better story.



As I watch and wait with my sweet friend who is battling her own chronic illness, I continue to pray for a miraculous healing that I never received and a remission that I never experienced because I believe that my God is big enough to do just that. She’s a wife, a mama to the sweetest one-year-old little girl, and she is one of the purest pictures of redemption that you’ll ever meet. She is just beginning to learn about this life that she would never have chosen. God may not perform a miraculous healing in her life, but I know His miracles don’t always come in the way we expect. I pray for her courage and resolve. I pray for her husband and daughter. I pray for pain alleviated, for joy experienced, for strength renewed. I pray grace, overflowing, relentless, and amazing. Join me in interceding for her? Will you please?

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