Tuesday, January 12, 2016

Lupus

Gwen conked out while looking through our year in review book of last year.

Last night I got a call from the doctor's office saying they got a test result back that pointed to an answer to the last few weeks. They told me what they think is wrong with me, I kept asking questions and wrote the word "Lupus" on a piece of paper and handed it to Russell.

You know in movies when they always tell people to sit down before they deliver bad news? I always thought that was a little over-dramatic.  But after I hung up I was kind of in shock. I feel young and, up until a few weeks ago, healthy. I sat down and Russell and I both started looking it up to see what we're up against.

Anyone who's googled a disease knows that it's pretty much a mistake from the get go. Everyone seems to know that, but we all can't help ourselves. Turns out there's no cure for Lupus. Years ago it was basically a death sentence. But now they've learned how to manage it so that 80 - 90% of people live a normal lifespan.

Lupus is basically when your body's immune system gets confused and starts attacking itself, causing inflammation and damage if not treated. You never know where it's going to strike, and everyone's symptoms are a little unique. But often it can go into a sort of remission, where inflammation will flare up, and then go away. I'll need to be careful, avoid stress, sickness, and too much sun. Healthy eating and exercise are helpful.

To get a firm diagnosis and treatment plan I need to see a rheumatologist, and the wait time is a whopping 4-6 months. As we've been looking into symptoms and thinking about things that have been gradually happening to me over the last few years it starts to come together and make sense. Depression, inexplicable intense pains, migraines, difficult pregnancies, and this most recent bout of inflammation that was brought on by infection and stress.

Russell and I have been going through a lot of stages of disbelief and grief. It's hard to imagine that anything like this could happen to us. It's scary to think of what it might mean to our future. Worst case scenarios start to run rampant. We're trying to keep our heads on straight and realize that we're really lucky to get a relatively early diagnosis. We're fairly well-equipped to deal with it. But it's still pretty shocking.

It's hard to tell what it means for our everyday life. Some things are immediately obvious. We can't have more kids. Luckily we'd come to that conclusion for ourselves already. My pregnancies were dangerous for me and the baby, and it seemed to knock me out off functionality for a full 2 years surrounding. But now the stakes are higher and it would be even more dangerous.

Also that I need to change my way of doing things. I've always viewed the ideal christian life as being one where you lose yourself completely in serving others. That may be true to some extent, but the way that I translated it was to not take care of myself. Going even further, that having needs is a sign of selfishness and weakness. That philosophy is not going to fly anymore. It's alright, cause it didn't even work to begin with. I was telling Lauren that I need to start shifting my life to really taking good solid care of myself. I hope I'm strong enough for it. It's a kind of strength I never thought I'd need. Strength to acknowledge my weakness.

I couldn't sleep last night, which has been common recently. It's been surreal - like we're in a movie complete with theatrical camerawork and effects. I was dreaming, and it all crescendoed into a crazy and confusing blur. Then suddenly I was awake and it was deafeningly quiet. There was just one word hanging in my mind: Lupus. It was strange and dramatic and unsettling. I was up for hours after that - trying to trick myself into not feeling all the little aches and pains.

Luckily things look better in the morning. I feel grateful for life and ready to not take it for granted. It's a beautiful sunny freezing cold day today. The kids are alternating between screaming and laughing like normal. Life moves forward inexhaustibly. It's reassuring that I'm going to keep getting pulled along with it. As always.


6 comments:

Dean, Andrea, Tanner, Landon, & Braddock said...

Good to have a diagnosis, but scary to move forward into the unknown. I've known people with Lupus that have some difficult times but also lots of pretty normal times. You'll still be in my prayers!!

Anna said...

Thanks Andrea! It's helps to hear that you know people that have it. I don't know anyone and that makes it scarier. If I keep going I'm sure I'll get more used to it.

Sassy Cassie said...

Anna!!! It's me! Cassie Wright ;) Andrea gave me a heads up with what you are going through. I'm so sorry life has been so hard lately!! I just wanted you to know that even though we haven't talked in years, I still consider you a friend and you are definitely in my prayers! My mom was diagnosed with lupus 10 years ago, and both of my sisters have had a flare up or two. It's scary and sucky and awful. BUT like you said, most people can go on living normal lives. My mom finds that she does best when she stays out of the sun and avoids certain foods. Obviously everyone's experience will be different. But I wish you well! And just know that you aren't alone! :D You are amazing and I'm always here to talk to! Or I could even give you my moms number if you wanted to talk to someone who has experience first hand :)

Anna said...

Cassie?! It's so good to hear from you!! I totally still consider you a friend too. :) It really helps to hear that your mom has it too, it does help me feel like I'm not alone. Your comment really helped me a lot today. Just knowing that there's people out there who care, even if I can't see them. Thanks Cassie!!

Rachel Warner said...

Anna! I'm so sad to hear about this. Are you doing okay?? It sounds like Lupus can be manageable, so I hope that is the case for you. Still shocking and no fun. I'm so sorry! We're living in Orem now, so if you need anything - seriously let us know! We're thinking of you guys.

Anna said...

Thanks Rachel! I think about you guys often too and hope Scott's health is good. Crazy that you guys are in Orem! We'll have to run into each other at walmart again. :) Hope you guys are doing well!