A Little More Each Day

One working mama learning to run & to maintain my 100+ pound weight loss!

An update after the rheumatologist . . .

on August 27, 2015

Thanks to all of your for your kind words and thoughts yesterday. Things went fairly well at the rheumatologist’s office. I got to laugh at myself answering the question “Have you fallen in the last year?” on the intake form – Of course! But that has everything to do with me being a klutz and not the arthritis. πŸ™‚

Thankfully, they didn't make me wear a gown.

Thankfully, they didn’t make me wear a gown.

I also got to laugh myself when I got rescued by the nurses before I accidentally walked into the wrong room returning from a restroom break. I didn’t faint when I saw the number on the scale (although that scale stinks – there’s no way that number was right). All good things.

Most importantly, I got some information. They think I’m on the lupus spectrum (and spent a while talking about how we don’t really have a good test for lupus so it is hard to ever say anything more definitive than that unless you have biopsy proven kidney disease – gotta love academic types! Totally speaking my language!) but I’m on the milder end. As he put it, this will be annoying but I’ll probably die from something else. Good, right?

I got major kudos from the fellow (a doctor training to be a rheumatologist) for being a very good historian and she laughed a little as she asked me what other symptoms I’d blamed on the stress of my job and being a mom. It turns out, a lot of little things that have been going on this year like fatigue, hair loss and mouth sores are actually lupus symptoms, not just getting old and stressed. My husband was especially excited because my super cold hands are likely part of this too. They seriously radiate cold lately – we just assumed it was the weight loss.

The part I found most intriguing is that they think my lymph node back in November that got me admitted was actually the first big flare of this, a rare phenomena called Kikuchi syndrome. Gotta love being rare and special right? That episode has always bothered me because it was so odd. I’m sort of relieved to know that there’s an explanation for it.

So what are we doing about all of this? First and most importantly, I feel a lot of relief just KNOWING. Knowing I’m not nuts and knowing that there’s a name for what has been going on. That means we can treat it and who knows how I’m going to feel once we start that? I’ve assumed that being tired and achy was just getting old. I’m only 37 – that’s not old, it turns out. Maybe I’ll get to feel a little younger again. That would be lovely. At this point, I’d settle for the arthritis settling down. Everything else I can handle.

They’ve put me on medication, which I will likely take for the rest of my life. That’s okay. It’ll take a couple of months to see if it works or we need to try something else, so this will be a definite test of my patience. In the meantime, I’ll keep taking the arthritis medication I’ve been on. I need to work a lot harder at drinking water while I’m on the arthritis meds as they can have kidney side effects, especially if I get dehydrated running.

I filled my 32 oz water bottle as soon as I got to work and promise to refill it at least twice more today!

I filled my 32 oz water bottle as soon as I got to work and promise to refill it at least twice more today!

I get to keep running! Even more importantly, they WANT me to keep running because it will help. I’ll confess that when I first thought this was rheumatoid arthritis, a HUGE worry was that I wouldn’t be able to run as much if at all because that can be much more joint destructive. I’ll also keep my focus on healthy foods. I need to work on getting more sleep and managing stress better. Looks like the yoga and meditation that are always on the back burner of things I need to work on incorporating in my life need to come to the forefront. Today I read this article on SparkPeople about “8 ways to put yourself on your priority list” that I definitely need to start actively working on.

 

Sunscreen is also going to be key. Not only can I get weird lesions from sun exposure (already have some of those this summer unfortunately), but the sun exposure can trigger my other disease symptoms.

All in all, I’ll be okay. I have a plan and can move forward. I’m fortunate in that some of the most well-respected rheumatologists in the country are here in Omaha at the University. I’m in very good hands. For my whole little family, this has made us pause and both appreciate what we have and re-evaluate how well we’re doing in taking care of what we have. I’m so blessed and have to remember that.

This also means I’m not going to set any time goals for my remaining races this year. I don’t want to stress myself out and beat myself over failing to meet time goals in my races (well, really the Des Moines half marathon – the only race I had a real time goal for in the remainder of this year) when my body is clearly doing other things these days. I still want to stick with my training plan – although in full disclosure I was NOT in the mental space to speed work Tuesday evening because I was stressed about the doctor’s visit and didn’t do my tempo run today because Oliver asked me to stay in to talk with him instead of running in the storm. I think getting through this training plan with its increased mileage is going to be good for my sanity and its own kind of achievement this year, as this is a lot more running than I’ve ever done in a training cycle. However, I’m going to treat my race as a victory lap to celebrate getting through a rough summer and the fact that I’m hopefully feeling better if the meds have kicked in by then.

I apparently make stellar scrambled eggs :) He was right about staying in instead of running - the hail started a few minutes after I took this photo!

I apparently make stellar scrambled eggs πŸ™‚ He was right about staying in instead of running – the hail started a few minutes after I took this photo!

Thanks to all of you for your support and your kindness! Having this community has been really helpful as I’ve struggled with these symptoms and the binge-temptations brought on by the stress I’ve had this summer. You guys rock!

PS This is all just my experience, not medical advice. Definitely seek out medical care if you having any concerning symptoms of your own!

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10 responses to “An update after the rheumatologist . . .

  1. Kristin says:

    Hey, I’ve been away for the summer, but I’m so so sorry to hear about everything that’s been going on! I’m happy you’ve found some relief and know what’s up. Yoga and meditation rock. I seriously think yoga/meditation combo can help in so many different ways! I missed you!! Many hugs and kisses to you! XOXO

  2. I am so glad that you got a diagnosis and can now move forward with a plan! I am especially happy that you get to keep running in your life, especially since it is so helpful in reducing stress!

  3. I’m so glad you got answers and have a plan for moving forward. As for races and training, I completely agree that just training is a huge accomplishment. A race is only a single day, but training lasts for months. It’s good that you’ll have the training to keep you motivated & aren’t putting pressure on yourself for the race.

    • Who knows if I’ll keep that up – I may get antsy about not having a time goal as I get closer. I really wanted a PR for that course. πŸ™‚ We’ll see how I feel. I just have to keep reminding myself “no pressure”

  4. Anna says:

    Even when it isn’t what you want to hear it is such a relief to get answers. I totally get what you mean about having something to attribute unexplained symptoms to – they can make you feel crazy. Sometimes though I wonder if I am attributing too many of my symptoms to MS and not working on my overall health to overcome some of them. Life is such a balancing act πŸ™‚

    • Exactly! It’s hard to know what little things are due to the disease and what are due to other things. I don’t want to lump things in the wrong category and ignore things I shouldn’t. Urgh.

  5. […] was an interesting week. Thanks to stressing out about the rheumatology appointment (update on that here), I missed out on Tuesday and Thursday’s workouts – speed work and a tempo run. My mind […]

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