Wednesday, May 8, 2013

Official diagnosis & plans

The doctor confirmed what I already knew - I have lupus. SLE, which is the systemic, autoimmune disease kind.

I was pretty mentally prepared for the diagnosis, but that didn't make today any easier. I'm going to be starting on the gentlest form of medicine as a three month trial. Based on my symptoms at that point, I'll either stay on that or move to the next type of medicine. They all have risks, of course, but the one I'll be taking initially is the safest. I'm also looking into an anti-inflammatory diet, which was recommended to me. It's very similar to how I eat now, with some additional tweaks.

There are a lot of changes to consider in the next few months. I cancelled my big 12 person, 200 mile relay this summer, which just about broke my heart this afternoon. Running this last year was an incredible, amazing experience.

The irony that I ran my first half marathon last year, on Mother's Day, is not lost on me. This year, I'll be getting a massage and hanging with my fun boys. Maybe partaking in a family bike ride, depending on the weather. And Sharon, for a Persian feast, my husband will make traditional kebabs, rice that has a potato "crust", and a yogurt sauce similar to tzatiki, as well as skewered tomatoes. You stack the beef on the rice, add a tomato & squish the juices, serve with the yogurt sauce. It's amazing. :-)

Last year - a bucket list item. My first half marathon!

I thought there were many more in my future, but I'm happy that I at least experienced the satisfaction and thrill of crossing the finish line.

Things I wish I would have done before this week:
  • Run a marathon. Again, bucket list, never made it happen.
  • Complete a triathlon. Registered and trained for one a decade ago, but it was scheduled for the weekend after 9/11 and was cancelled. Never tried again.
  • Purchased portable life insurance. Yes, this is something I mentioned many times as something I needed to do on my blog. And, I didn't do it. Now I'm stuck with life insurance through my employer. Should I want to/need to leave, I'm out of luck. I'm very, very disappointed with myself for not following through and getting things in order.
  • Had a third child? I don't know how I feel about this one, but I wish the option was still open. Nothing like someone telling you that you can't/shouldn't do something for it to really appeal. ;-)
I'm now in the "moving forward" phase, where I'm going to think through my life and everything that I spend my time and energy on. Things that are not of high value are getting cut. My time and energy is precious, & I want to have enough energy to do the things I enjoy and be a great mom and wife.

I'm not sure what's going to happen with my job. I know that right now, my workload is not sustainable. I also know that my health insurance is amazing, I've been with the company for 15 years, & I've devoted a heck of a lot of my life and passion there. It's not the kind of place where you can scale and moderate - you're either all in giving 100%, or you're not. It's INCREDIBLY competitive, and I've always been a star performer. I don't quite know how to rationalize that now.

I'm also thinking of starting a healthy living blog for people with lupus - from diagnosis, medicine, food, exercise, etc. I've been looking for similar blogs & can't find anything, so maybe others would find it helpful. We'll see if it makes the "energy level" cut. :-)

Thanks for all of the positive thoughts over the past week.

Things on my to do list this week:
  1. Get more up-to-speed on my health care plan at work. I haven't needed it much, so time to get nitty gritty on my coverage.
  2. Make an appointment with an eye doctor. It's required for taking the medicine I'm starting, as there is a small risk of going blind. Oh boy.
  3. Re-adjust all of our summer plans based on some updates to the schedule.
  4. Re-run our financial numbers for a variety of employment scenarios.
  5. Find some good, low-impact workouts. I've been walking so far, which has been awesome.
What's on your to do list this week? Do you have portable (i.e. not through your employer) life insurance? If not, what are you waiting for?! Go out there & get some! :-)


  1. I am very sorry to hear this, but at the same time...happy you have an answer. Does that make sense?

    I think making the changes are a good idea now, and maybe down the line, you can add things back in, as your energy level and overall health status allow. I wouldn't count out the marathon just yet. Maybe it isn't a this year thing...but you don't know about the future.

    The baby....I hear ya. After I lost my third baby, the doctor more or less said "no more." I still get the baby twinge now and then. But I am happy with my family. And I know you are happy with yours.

    Life insurance....I keep saying I need to do it. So you have convinced me to do it now. I am 38....40 is just around the corner.

    I hope you continue to share, as you feel comfortable.

  2. Few things about my future on my to-do list for this month (possibly moving in the next quarter, deciding on my professional cert vs a master's, etc). I am too young and dependent-less for portable life insurance, though...

    I am very sorry to hear about your diagnosis, but your good attitude towards what's ahead will make a world of difference now and in the future, so please do keep it up. I do hope your job can work with you and any future restrictions to make your work-life balance better. Again, don't let go of that good attitude, and even if you feel miserable inside, keep faking it until you make it. Your view on events like these is truly inspiring.

  3. I'm so sorry for the confirmation of the diagnosis. ((hugs)) You are a strong and healthy woman and I pray that the gentle mediciations will help you. We have life insurance through hubby's work and just started a new plan for $500,000 for both or $250,000 each thankfully and have paid the premium for the year. I waited a long time saying we "couldn't afford it", but really, how can you not? :(

    Stay strong my friend!! :)

  4. WOW! I have been kind of missing in action and this is what I read!

    I am very sorry about the diagnosis. You are one the few people I know (even if virtually) that can tackle head on. This is your new run, and it IS a marathon, even though some days it may not feel it.

    Take care and please, let us know if you need anything.

  5. Thanks, everyone. I'm focused on getting myself in the best shape possible, and carefully considering my next steps to ensure that I'm healthy over the long-term. It's definitely scary, but I've been preparing myself for this, and it's honestly sort of a relief to know what's wrong with me.

  6. So sorry about your diagnosis. I was misdiagnosed with Lupus then retested and it turns out instead I have Fibromyalgia which has a lot of the same symptoms and is a relative disease of Lupus. Take care. If you leave your job most insurance companies (in Canada anyway - might be different in USA) allow you to commute your life insurance into an individual policy without being medically tested again. You may want to look into that. You might also consider asking to work from home as an option which might be easier on you (if that is at all possible).

  7. I'm so sorry to hear this. I know it cannot be easy for you to restructure you life, especially the things you LOVED.

    So sorry about the life insurance issue. Sometimes we don't get to the important stuff until it's too late. You may be able to get some life insurance, check with Zander Insurance through Dave Ramsey's website.

    In the meantime, enjoy that Persian feast (sounds fabulous, by the way!) and TAKE CARE OF YOU!!!

    Sending prayers and lots of {{{hugs}}} your way!!

  8. I just caught up on several posts that I had missed. This seems like it came out of the blue. I'm sure it seems like that for you too. I'm so sorry to hear about this. My advice would be to focus on what's really important in your life. You may not be able to have another baby but you do have two beautiful boys and a husband who loves you.

  9. Just sending you ((((hugs)))on hearing your news. You have a wonderful attitude and it's only natural that it will take some time to adjust and plan your next steps. I think the idea of a blog is wonderful, I'm sure there are others in a similar situation who will relate. Take care xx

  10. I'm sorry to hear this too. Take care of yourself.