Happiness Project #1: SLEEP

I’ve got to work on non-pharmacologic management of my lupus symptoms now that I’m staying off of the Alleve for my joints. I know from the last couple of years that poor sleep is a huge trigger of bad lupus days for me. Poor sleep also makes it harder for me to deal with stress in general and might make it harder to lose weight (more on that in links below). All together, these things are ample motivation to make improving my sleep the first big Happiness Project I tackle in my #40by40 goals.

 

I’m a task oriented person and certainly more successful when I have concrete habits to track. From the Happiness Project book and website with Gretchen Rubin (here), I found some great charts for keeping track of my sleep related tasks. In addition to buying a new pillow (little things help!), I’m going to incorporate these as my daily tasks to sleep better:

 

– Stop caffeine after 3 pm. I love my coffee, so this may be painful, but on the plus side maybe it will steer me toward drinking more water in the evenings.

Elixir of the gods

– Make tomorrow’s task list for work BEFORE I leave work. Frequently, I’m swamped by stress at night about what I have to do tomorrow. I’m going to try reviewing my schedule for the next day and making my task list before I leave work, to try to head off some of this angst.

– Turn off devices at 9 pm. Period. No TV, phone or other blue lights. This might seriously impact my ability to watch TV with Darrell, but we have the weekend for that (and I’m already down to only a few shows that I watch anyway).

– Have a consistent bedtime and wake up time. 9:30 pm – 5:30 am would get me 8 hours of sleep and have me up in time for 7 am meetings or for workouts in the morning. Getting into a consistent pattern would help tremendously (with exceptions for date night and other rare occasions, of course).

– Adopt a bedtime meditation. This can help both with transitioning to sleep and with dealing with those twilight anxiety episodes that often derail my sleep.

 

This bedtime meditation might have helped Wednesday night when I couldn’t sleep because of stupid Mom-brain anxiety over whether or not anyone would come to this guy’s birthday party:

He has a back-to-school birthday, which is a really hard time to schedule a party both because everyone is busy and because it’s hard to know who to invite – old friends? New friends? Both? We elected for a party a little after his birthday and the start of school (it’ll be next weekend) and an invitation list of both new first grade classmates and some kindergarten/summer program friends. Because O wanted to invite first grade classmates, we had to wait for the class list to come out – which it did last week, while I was away. By the time I got home, got the invitations written and mailed, most people would be getting their invitations Wednesday and Thursday of this week, with only 10 days before the party. In the meantime, we found out that another classmate has a party on the same day (AM and ours is in PM). I was freaking out with Mom-guilt over sending out invitations too late and would anyone come to his party and how would we handle it if no one came. All totally unnecessary mental drama, I know, but my brain is like that at bedtime sometimes.

 

All is well. I’m at 5 RSVPs now, which is enough of a party for me and for O. I’ll sleep better now. 🙂 Bedtime is a hard for those of us with a worry-wort mindset so a bedtime meditation will be very helpful I’m thinking!

 

What are your strategies for better sleep? I also got a lavender spray for my pillow that’s supposed to help sleep, but mostly it just annoys Darrell.

 

Resources for Sleep & Weight Management:

Lack of Sleep & Weight Gain (WebMD)

Sleep Loss & Weight Gain (USA Today)

Molecular ties between lack of sleep and weight gain (NIH news release)

Sleep and Obesity (Review article in Current opinion in clinical nutrition and metabolic care)

Sleep & Lupus:

http://www.resources.lupus.org/entry/sleep-is-essential

https://www.hss.edu/conditions_lupus-fatigue-cognitive-dysfunction.asp

http://www.mollysfund.org/lupus-and-sleep/

http://www.resources.lupus.org/entry/sleep-and-lupus

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Weekly Wrap-Up: Still on the lupus learning curve . . .

For the most part, I forget about the lupus. Nowadays, I’m used to the constant ache and the fatigue. They’re just my baseline. Frankly, I suspect that’s the baseline of lots of overworked moms. And non-moms. I tend to forget the lessons I’ve learned about what tips things over into “noticeable” territory with lupus. Last week, I got reminded. I told you on Friday that I’d had a lot of food successes over the week with my work trip and that’s true. I made reasonable choices for the most part and came home feeling tired but successful.

Did I meet all of my goals? Nope – I didn’t get any runs in because I was just too tired and decided not to push it in this “warm up” week of my spring training. The social and professional networking at these meetings just drains me and I recognized that if I did too much, I’d set myself back more than those two runs were worth.

However, I apparently forgot about the wisdom of not overdoing things when I got home. I got home and immediately turned around to a day in which I had a 6:30 am meeting, work all day, lovely break for a facial in the afternoon (yay!) and then work all evening until I rushed out to grab dinner with Darrell for his birthday and then pick up O at parents night out. Oliver and I packed in a mad dash so we could leave early in the morning Saturday for Darrell’s birthday gift: a weekend to himself. Oliver and I left the house at 7 am Saturday morning and didn’t come back until 3 pm Sunday. I never actually unpacked from the work trip – just reloaded the bag with his stuff on top of mine. We had lots of great mother-son bonding time, including some pool time together, games, decorating a Valentine’s day box, food at our favorite places and movies cuddled in the hotel room bed. He wanted to sleep in the bed with me, which meant I got kicked and poked all night long (SPIDER MONKEY!). However, he seems like he’s in a much better place after that so it was worth the bad sleep (mostly). I need to make a conscious effort to have some one-on-one time when I get home from these work trips. Among other things, learning what he thinks is funny was incredibly enlightening. And entertaining.

Between the bad sleep and the fact that I somehow lost track of taking any of my lupus meds through this crazy Friday-Saturday-Sunday, I was in bad shape by Sunday night. Last week’s plan of four runs including back-to-back runs on the weekend? Ha. I did get in one run on Saturday, which felt good, but that was it. Oh, and that healthy eating on my work trip? Let’s not even talk about what happened over the weekend . . .

Now, I pick myself up, dust myself off and start again. It’s just the beginning on my training plan – screwing up the “warm up” week isn’t catastrophic so there’s no need to dwell on that. I refilled my pill box because I need those meds. I got some sleep. And some more sleep. I got back on my meditation pillow Monday morning. I ate whole, healthy foods all day yesterday. I ran hills today.

I am taking it one day at a time. I can’t beat myself up for last week. I just learn from it and move on. Also, lupus still sucks.

How was your week? What’s your favorite back-on-track workout? I really loved the hills this morning – you can squeeze in a hill workout even when time is short and feel like you got some quality work done before your day starts!

 

Thanks as always to Tricia and Holly for hosting our link up! Check out everyone else’s week (which were hopefully more successful than mine!)

Weekly Wrap-Up: Feeling a little like a runner again

Yes, even though it is seriously hot here in the Midwest (with even more heat coming this week), I’m feeling like running again. That running retreat I attended last week did a lot to get my mind in gear for marathon training apparently. 🙂 Whatever caused this boost in motivation, I’ll take it! I hit my workout goals this week of two weekday runs (training to wake up early is an important first step of any training plan, right?) and a weekend run of a set distance where I actually strapped on the Garmin. Done and done! I even got in some stretching, foam rolling and strength work!

Workouts: We’re just going to highlight the workouts I actually did, since Monday, Wednesday and Friday included stretching and strength work, but no other dedicated workouts per se.

Tuesday I went for a thirty minute run/walk in the morning and another ten minute walk later in the day. It was a Garmin-less run – probably about 2.5 miles – but just the effort of getting myself out of bed is important to re-learn. I need to get my morning routine a little faster!

Thursday Pretty much the same as Tuesday – woke up, went for a little run. This was shorter – about twenty minutes – but I’m glad I didn’t skip it all together even though I was tight on time. Any run is better than no run at all, right?!

Saturday It felt a little silly wearing a Garmin for just three miles, since I know a couple of three mile routes in my neighborhood, but psychologically I wanted that signal to myself that it was time to get a little more serious about training again. My plan for the next few weeks is to have my weekend runs at a set distance: 3 miles this week, 4 miles next week, 5 miles the last weekend of July – all so I’m ready for the start of training 8/1, where my first weekend will include 4 and 6 miles back to back.

Sunday My training and race cycle for the next few months includes first getting me ready for the back-to-back half marathons that make up the I-35 challenge in October and then picking up at the “half marathon” point in the Hal Higdon novice marathon training program to get ready for the Walt Disney World Marathon (less than 6 months away!). The first half of training will thus include back to back runs on Saturdays and Sundays. Given that, I thought with my progressing 3-4-5 mile runs over the next three weekends before training really starts, I’d also sandwich those with 3-4-5 mile walk/runss as well. That plan got a little hijacked this weekend when Darrell woke up Sunday with horrible vertigo. Thus, instead of getting another dedicated 3 miles, I instead got a day with 12,000+ steps and loads of hilly walking as Oliver and I tackled the zoo and the Wildlife Safari park. My legs were tired enough after it was all done to definitely count this as a workout.

I’m grateful for the time I got to spend with him too. For the last week or so, I’ve been really lupus flared with worse swelling and stiffness in my hands and arms than I’ve had since my diagnosis, coupled with weird skin stuff and jaw pain and just general lupus yuck. I’ve been trying to figure out what might be triggering it since work isn’t especially stressful and that’s usually my trigger. I think it’s a combo of sun exposure, poor sleep coming out of vacation and a general sense of anxiety and unease about all of the things happening in our world. I just want to wrap my family and my people in a bubble to protect us all, but it’d have to be a really big bubble because it turns out everyone is “my people.” Having those hours with my most important little person, feeling his little hand in mine and knowing that at least for the moment we were safe and together makes me so grateful and so heartbroken for those who can’t say that anymore. My goal this week to write down my gratitude every day and to listen to my kid in the car and at dinner every day without focusing on the thousand other things on my to do list. My hands feel a little better today and I suspect those hours with his little hand in mine are what has helped.

I had lots of good deeds this week, which I think came from a desire to counter all of the bad out there. My favorite was holding a baby so a Mom could go to the bathroom without trying to juggle her three month old while we were at the zoo. I like weeks where I can remember several good deeds – I should make more of those happen!

My NSV is one that wasn’t immediately obvious to me at first, but in hindsight, I’m proud. For the last year or more, I haven’t been able to have ice cream because the lactose intolerance has just gotten too bad. I’ve had a couple of dairy free soft serve things, but nothing that really felt like ice cream. Darrell found this almond milk ice cream when we were checking out a new grocery store Friday night and when we got home, I did the “wrong” thing and just started eating it out of the carton. Always a bad idea with those pints of ice cream because the pint seems small enough to be a serving – totally not true, sadly. Anyway, I happily ate 600 calories of ice cream and it was delicious. It felt like real ice cream. Did I intend to eat all of it? Nope, but did I feel self-disgust and binge-y afterwards? Nope – I just mentally put that stuff on the list with cookies of things I probably shouldn’t keep in the house and moved on with my evening. Big win!

Anybody else make new grocery stores a family outing? We have wild and crazy Friday nights around here!

Thanks as always to Holly and Tricia for hosting our link up!

Managing your energy

Last night, I went to bed at 8:15 pm. I was probably asleep before Oliver. I blame the state of politics in the US as I stayed up far too late on Tuesday night watching CNN. When I was younger (and pre-lupus), I could have a night with 6 hours of sleep and do just fine the next day. Those days are long gone. These days, if I get too little sleep or push too hard, I feel it in whole new ways. One of the more annoying quirks I’ve developed since the lupus started is dizziness on days I’ve done too much. Yesterday, I was having dizziness enough that I had to close my eyes to stop the spinning when I did something as simple as turning my head to look at Oliver at dinner. I definitely get much more profound “You’re DONE” reminders than I used to.

Managing your energy levels is important for all of us, not just those of with autoimmune stuff. We all have times of day when our energy is good and times it isn’t. Learning your own patterns so you can take advantage of them can be hugely helpful in making lifestyle changes. I think of energy like money: we’ve only got so much, so spend it on things that matter most. Side note: Would that make coffee like a credit card since it lets me stretch a little farther than I should? Hmm . . . . .

 

For me, I know that my energy is best in the morning and particularly on weekend mornings. Makes sense, right? I get myself into trouble when I forget that though.

– If I don’t get my workout done in the morning, odds are good I’m going to come up with some excuse to skip or force myself through a miserable workout.

There are other perks to working out in the morning too – gorgeous sunrises!

– I do my meal planning and grocery shopping on Saturday morning, because that’s when I feel the freshest and most optimistic. Optimism is key for me in making good choices, it turns out. 🙂 If I can take advantage of that weekend morning energy to fill my house with healthy foods, it makes it easier to avoid the kind of things I buy for dinner if I’m stuck doing it on Monday evening after work. Ugh. Let’s just say that after an after-work trip to Costco this week, frozen burritos and frozen buffalo chicken egg rolls may have made their way into my basket . . . .

– I do my meal prep on Sunday mornings, when it is quiet and peaceful and I’m in a good spot mentally to prepare for the week. The later I wait in the day, the more likely I am to skip the prep and let those healthy foods go to waste in the fridge.

Big wins any time I can prep lunches ahead of time for the week!

When we try to do the “good stuff” when we’re tired (physically or mentally), it makes what is already a sort-of-difficult choice that much harder. If you can’t take advantage of your naturally high energy times because of job or parenting or other needs (because diet and exercise aren’t the only things worthy of our energy, I know), it’s worth thinking of ways you can work around that. I know that nowadays I’m a lot more wiped out by big efforts in the mornings. I may have a great long run at 6 am Saturday, but by 1 pm I’m a zombie. That never used to happen – thanks lupus – but now that I’m aware of it, I try to take naps in the afternoon at the same time Oliver does so that I’m in better shape for my family and other important tasks later in the day.

Like everything else with lifestyle changes, everyone is different, so it’s worth looking into what will work best for you.While I went to sleep at 8:15, I was up at 5:30 am and out to run this morning feeling springy and smiley. Mornings are clearly my time. Learning your own patterns and when you’ve got the most energy can definitely make it easier to make good choices.

Do you notice it’s easier to get certain healthy tasks done at certain times of the day? Weirdly for work stuff, I get a surge of productivity at 4 pm. I have to set an alarm for 5:30 so I can be sure I leave in time to get O before daycare closes!

Weekly Wrap Up: Recovery week

I normally think of recovery weeks in terms of races, I feel like I need to start thinking about it terms of recovering from lupus flares too. This one of those weeks, after flaring up in Memphis, but I’m happy with how I handled it overall. I was eating great, tracking my food and sleeping 8 hours every night. Thus, despite some residual ulcers in my mouth (yuck), I’m overall much much better. Yay for self-care! I even got some workouts in among all of that. 🙂

Workouts

Monday 3 slow miles, but movement counts. My legs felt like lead weights and this was the slowest 3 miles I’ve done in ages!

Tuesday Rest day – just couldn’t make it happen

Wednesday Walking – I’ve realized that on weeks like this where I’m coming down from a trip, there’s no way I’ll have energy to run if I leave my workout to be done after work instead of before, but I can still go for a walk. Yay for 10,000 steps, no matter how they happen!

Thursday I got to bed a a reasonable hour, so I was able to get up at 5 to run my two tempo miles. I approached these just like I did in the fall, focusing on running consistent race intervals (2 minute/30 second in this case) rather than worrying about speed and ended up at a little over 12 minutes for the first mile and 11:40 for the second, so well within my planned race pace of 12:10/mile.

Friday Oliver was up in the middle of the night with a nightmare, so nobody in my house slept well. I definitely did not sleep well enough to get up early to run, but I ended up with a really lovely walk with Darrell as part of our date night. I loved that and confess that he may need to get ready to have that as a regular part of date night! It was just so nice to talk to him while we walked a couple of miles around the neighborhood. We talked about Once Upon a Time and what we thought of the most recent episode and super novas that might blow up the constellation Orion’s shoulder or obliterate all life on earth. You know, the usual.

Saturday The one problem with date night is that it occurred because Oliver went to parents night out at the gym and got home at 10 pm totally revved up from playing. We all slept a little late to make up for that.  I love unscheduled weekends because there isn’t nearly as much mental stress on my part for finding a time to work out! I got in a 3.3 mile run, plus some quality time cleaning up my flower beds. If spring is coming early, I need to get to work!

Sunday I had a great 9 mile run, with my last mile just below 11:30 pace. It was overcast and in the 50s – perfect running weather! My favorite activity of the day, however, was running alongside this cool dude on his bike before dinner.

All in all, a good week. 18.3 miles, with a strong long run AND I finally got around to actually registering for the Papillion Half Marathon in May. Now I can’t let myself off the hook. 🙂

I’m on call this week and have 3 different 7 am meetings – ugh. I always plan on call weeks as “do what you can” weeks in terms of workouts, so I’m not committed to any runs although I’m hoping to at least get out some this weekend. My fitness goals for the week instead are to a) do strength training at least 3 times – that is doable on call and b) get 10,000 steps and 10 flights of stairs every day. Those goals should keep me moving so I can pick training right back up next week! It’s funny – even without a big goal for this spring’s half marathon, just knowing I’m going to run a race gets me out to run every week and that’s totally worth the registration fee.

Thanks as always to Holly and Tricia for hosting our link up! How do you stay active when life is too busy for your usual workouts?

 

The Importance of Rest . . .

Rest is a tricky thing when you’re trying to get healthier. We all know that sleep is good for us and that rest is important, but we’re also supposed to have healthy meals and exercise and have meaningful connections with other people and oh yeah, we need to work so that we can pay for things (and because work can also have meaning in our lives). Some times it feels like something has got to give. I’ve always known this intellectually, but lupus really drives it home in a new way for me. Now, if I don’t rest enough, I know it because my elbows get so sore I can’t rest them on table. Good for table manners, bad overall. My hands are just this constant dull ache and oh yeah, ulcers in my mouth that make it hard to eat. Boo. Lupus gives me a more vivid reminder to rest, but even before lupus, I saw signs that rest was important.

Hanging out in bed a little longer might actually be good for you!

Last week in Memphis, I was exhausted from an early flight and that set me up for a long weekend of bad food choices. Looking back, fatigue is often a trigger for me in bad food choices and it turns out, that isn’t just in my head. Certainly, fatigue of any kind makes decision making harder and when I’m traveling outside my normal food comfort zone, there are lots of food choices to make. It’s easy to make a bad choice when I’m choosing over and over again on a tired brain.

There are also two hunger controlling hormones that are thought to be affected by sleep. Ghrelin is the hormone that tells you it is time to eat and when you’re sleep deprived, you make a lot more ghrelin. It isn’t just in your head that you’re hungrier when you’re tired! The balancing hormone, leptin, is one that tells us that we’re full and it is time to stop eating. Guess what? When you’re sleep deprived, you make less leptin. It sets you up for the tired-starving feeling we know all too well.

So how do we make this work in a busy life? I used to say “yeah that sucks” and get up early to do my workouts anyway, figuring that my workout was just as important in my weight loss as sleep was. Now, I’ve decided that since a) I don’t have huge time goals for this half marathon anyway and b) lupus demands rest, I let sleep take priority. That means going to bed at 9 pm if I want to wake early to run (working well so far!) and that if I don’t get to bed early, no early wake up.

Last night, I didn’t get to sleep until 10 pm because I was watching the primary results roll in. It was hard to make myself set the alarm for 6 am, instead of 5, knowing that I wouldn’t be able to work out in the morning with that wake up time. However, it’s more important to get my sleep than to get my workout. I may run after work, I may not – depends on how close I get to my bedtime – but I’m going to put sleep first.

Other than protecting our sleep, what can we do to help?

• Naps can help with blunting that hungry feeling and do seem to help with my lupus symptoms, but be careful about trying to use naps to catch up on sleep debt. A consistent pattern of 7-8 hours sleep a night is better for you than marathon naps on the weekend, no matter how fun those naps might be.
• Minimize choices, if being tired makes it hard to make good choices. If you’re going into a situation where you know you’ll be tired, arm yourself with easy, healthy snacks to tackle that hungry feeling. The less effort we have to put into making a healthy choice, the healthier that choice is going to be.
• Drink! Coffee is an obvious go to for a lot of us when we’re tired, but water is even more important. If you are pounding back coffee (I’m not even going to lie and pretend I don’t do that), be sure it isn’t the over sugared frou frou coffee drinks because those calories will seriously add up!

Elixir of the gods

• Take note of patterns that set you up for failure and rope in support to deal with them. Darrell and I plan our week ahead of time, to be sure I’m not up too late and that we’re streamlining our to-do list as much as possible so we don’t overdo it. Be careful in saying yes to new things on the list so that you can keep the important things in focus (and sleep is an important thing!).

I’ve got another trip coming up to New Orleans at the end of the month and as much as I enjoyed the food in Memphis, New Orleans is my food mecca. I LOVE to eat there and have fond, visceral memories of the fantastic things I’ve enjoyed in that city. It’s also going to be a meeting where I’ve got to network (exhausting for introverted me!) and where I’m sleeping away from home, which never works well for me. My flight times are slightly less crazy (7 am departure and 8 pm back home, as opposed to 5 am departure and midnight back home with this trip) which will help for this trip, but I’m going to do a better job prepping myself with healthy snacks and my water bottle so that I don’t get derailed in the airport. I’m absolutely going to enjoy some fabulous food, don’t worry, but I won’t fall into the trap of the not-worth-it conference food like I did in Memphis.

How do you deal with fatigue and hunger (other than loads of coffee of course)?

Other things to read:

Is too little sleep a cause of weight gain? (Mayo Clinic)

Sleep and weight gain (WebMD)

Thinking about my diet & lupus

I’m a little more than 6 months into this lupus adventure and have figured out some things that clearly trigger my symptoms, like a poor night of sleep or work/parenting stress. Sun makes things worse and running makes things better, which makes spring and summer workouts complicated. I’m also starting to notice that there may be other things triggering these symptoms and wondering if I need to pay attention to food more closely. With my flare a week or so ago, things seemed worse after we went out for Valentine’s Day lunch, which is part of what made me wonder if something I eat or drink (perish the thought!) might make things worse. We all know I’m not particularly into restrictive diets or avoiding foods willy nilly, but I thought it was worth looking into what kind of things I need to think about in terms how I eat to help my lupus symptoms. After all, food can and should be part of maintaining overall health, not just the “enemy” in terms of weight loss and weight maintenance.

The most important thing to remember in terms of food and lupus is to maintain a healthy diet, just like everyone is supposed to eat, with lots of fruits and veggies, lean proteins and calcium containing foods while avoiding processed foods and saturated fats. Not only are these things good for us in general, they can also help minimize some of the things that occur as complications of lupus and as side effects of lupus medications, like an increase in heart disease seen in lupus patients and an increase in osteoporosis or brittle bones because of the sun avoidance and decreased vitamin D, as well as a side effect of some medications. I try to do all of those things anyway, so I was reassured by most of what I read in mainstream resources. This kind of diet can also help you maintain a healthy weight, which is important in minimizing the stress our poor joints are already experiencing, maintaining our cardiovascular health as much as we can, and because some believe that obesity itself can worsen systemic inflammation.

However, I did run across a few interesting things that I wasn’t aware of. I didn’t realize that there’s a compound in alfalfa sprouts, which I commonly include in my salads if I eat at a salad bar, that can trigger lupus flares and was recommended as something to avoid in almost every source I looked at! (L-canavanine, if you’re curious) Distressingly, a lot of resources also recommend avoiding garlic because it can stimulate the immune system. I felt so betrayed by the John Hopkins Lupus center for including garlic in its list of things to avoid because I can’t dismiss Hopkins as whack-a-doo medicine. Sigh.

Caffeine is on some lists, as is alcohol (although most say small amounts are fine) and sugary foods. In both of my most recent flares, I had both sweets and alcohol in the 24 hours before. It’s telling that I’m much more willing to consider the possibility of giving up sweets (or at least avoiding them as much as I can) than I am willing to give up alcohol. Obviously, I’d do whatever I needed to in order to stay healthy, but please don’t take away my wine!

Wine is good for you too right?

Another thing I ran across was the idea of nightshade foods, like white potatoes, tomatoes and peppers, triggering symptoms for some people. For the nightshade foods, it appears that some people are sensitive and some aren’t so you have to experiment a bit. Really, with all of the autoimmune diseases, our individual triggers are going to vary. That’s why I’ve been careful to stick to more mainstream, evidence supported sources of information in my “research” because there are so many individual stories out there and those things may not be universally true.

I’m working on keeping track of what my symptoms are and what I may have been exposed to in the day preceding the symptoms, especially things on this list. I’m realizing now how difficult it is to completely avoid these things! I’m trying to avoid nightshade plants for the next few weeks and then reintroduce them to see if they are a trigger for me. The avoidance of peppers is killing me because that includes a huge number of my spice mixes and spice mixes used with food in general! I have a whole new respect for people with food allergies and I’ve only been doing this for a few days.

Aside from highlighting how hard dealing with food restrictions must be, I’m also newly appreciating the importance of food in my overall health. Healthy foods can be medicine and we need to respect them as such. By being aware of how what we eat makes us feel, we could all learn a lot about ourselves.

Elixir of the gods

Have you ever had to avoid certain foods because of allergy or intolerance? What was the thing you found hardest to give up? I confess, I’d rather live a life without cheesecake than a life without wine and I am not even willing to consider a life without coffee at this point, even if caffeine is also on this list.

Note that I’m not a dietitian or rheumatologist so none of this is medical advice! Just my thoughts as I travel this new road!

Resources:

Web MD Lupus Diet

Molly’s Fund The Lupus & Diet Dilemma

The John Hopkins Lupus Center Diet

Lupus.org Will nightshade vegetables increase joint pain or lupus flares?

 

Weekly Wrap Up: Making peace with a flare :(

This weekend did not turn out like I expected. I had plans to finally meet my mileage goal for the week with a 4 mile run on Saturday and an 8 mile long run on Sunday. As often happens with parenthood, kid stuff derailed me and then lupus piled on.

Oliver got sick Friday night and was up late with fever. I could tell O was getting sick when he refused to eat the brownie we decorated at the Valentine’s Day party Friday afternoon in school.

He ended up in bed with us Friday night, which means I pretty much did not sleep. On a good night, he’s a wild sleeper. When ill, he’s a monkey high on Mountain Dew. I slept not a wink. He’s doing better – the fever only lasted about 24 hours. It took me longer to get back to normal. It turns out, a horrible night of sleep made all of my lupus symptoms flare up, with swollen hands and pain in my hands, my elbow and my jaw. Ugh. I also forgot that other lupus symptom I tend to pretend doesn’t exist – fatigue.

I gave myself Saturday off, figuring being 4 miles short for the week really isn’t any different than any other week in this first month of spring training. I assumed I’d be back to normal Sunday after a good night of sleep (which I did get, thankfully). However, that isn’t what happened. While I could tell I’d slept, the fatigue was still there. The swelling was still there. The pain was still there. My husband had to point out to me that I’m sick and this is going to happen. I’m lucky that I have mild, annoying lupus, without any of the more serious complications at this point but man is it annoying. I also haven’t really figured out when I’m feeling tired because I’m a working mom who just powers through tired or when I’m feeling tired from the lupus. If I were giving advice to a friend, I’d point out that either way, I should take the time to rest. However, I struggle with seeing that and allowing myself that time. Instead of my long run, I spent Sunday afternoon in my tub with the jets going and bath salts.

I can’t remember the last time I missed a long run on a training plan. I know it isn’t a big deal in the grand scheme of my training this spring. I have repeats of my longer distances in the plan, so missing one long run isn’t going to hurt. I knew I’d have trouble getting everything in thanks to weather around here anyway, so a missed run isn’t catastrophic. On the plus side, I did end up with over 8K a steps a day for the week thanks to a great and active week prior to Saturday. I also did get some runs in and some strength training and today is another day to start again. And on the greatest bright side, I’m married to a man whose response to a sick and slacker wife is to send me to the tub and ask if I need to regularly schedule more spa days to keep from getting run down. 🙂

Looking at this week, I’ve decided that I just need to let that 8 mile long run go. I’ve got the first interval workout on the training plan tomorrow, so it wouldn’t be a good idea to do a long run today before an interval workout tomorrow.

I got up and ran a little over 3 miles this morning. It felt so GOOD. It’s a tricky circle. The lupus makes my joints sore and makes me tired, both of which make it hard to run, but running makes all of those symptoms better. I just have to be careful about listening to my body more than an arbitrary training plan. I went through this in the fall and trusted my body not to push through too much and ended up running my best race at the Des Moines Half Marathon in October. I know this will get easier soon weather wise, too. All of the high temperatures in my 10 day forecast are over freezing! And there’s no significant chance of snow! All great things. I never used to mind the cold or the slippery surfaces of winter, but now I can’t tolerate the cold at all thanks to the Raynaud’s that comes with lupus and I’m terrified of falling on already sore limbs.  Maybe that ground hog is right and an early spring is coming. Fingers crossed!

This is sort of a downer weekly wrap up, but I have high hopes for this week! I’ve already started with a good run this morning, over 10,000 steps for today and some quality time with O. He and I are going to a kids cooking class at 4, which I’m really looking forward to! I’ll be sure to let you know how it goes.

I hope you all had a lovely weekend! Be sure to check out Holly and Tricia’s Weekly Wrap round up. I will be checking out everyone else’s wrap ups to get a boost to get me over my funk about yet another not-quite-good-enough training week. 🙂 Thank goodness I’m only in this spring race to get me running regularly!

 

An update after the rheumatologist . . .

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. 🙂

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 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!

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!