Wednesday, July 28, 2010

Yay for my eyes not being eaten!

Eaten by my plaquenil, that is. I've been having headaches for the past two weeks about and I thought that the plaquenil may be the culprit. Obviously, this was a scary thought for me as I prefer taking plaquenil to other, more damaging drugs. But, after a trip to the eye doctor and a round of that horrid stuff that dilates your eyes I was told that wasn't the cause. Thank goodness!
So, I'm supposed to make an appointment with my primary. I'm due for a physical anyway (blech) so I guess I'll schedule it after I return from Spokane.

Also, I had another kick ass day at PT. I rocked some deep water work to get my heartrate up and I used the bands to add a different dimension to my arm workout. It was a good time. Oh, and I chatted with a lovely old lady about arthritis. She was very nice.
I think I'm okay with being seen by this oother water therapist but I do worry that she's holding me back a bit. But, who knows, maybe I need to be held back for my own good?

Speaking of good- I'm going out to the pub tonight to meet some friends. I hardly ever do the bar-thing, so I think it will be fun for a change of pace. One of my friends is threatening to take me to a hip hop club afterward... which will NOT happen.

I leave for Spokane on Friday... I'm so excited!

Monday, July 26, 2010

Fantastic Weekend!

This past weekend was just super fun-packed! It's so nice to be feeling great so I can do fun stuff with my hubby.

On Saturday we made it to the California State Fair. We went in the evening to prevent sunburn. It was the perfect date- cute baby animals, BBQ food, fun rides, and Kevin won me a stuffed penguin. I'm very lucky to have such a great guy.

Sunday I finally caved in and went for a bike ride with Kevin. I used to have a road bike but it was stolen. Kevin recently bought me a new one. Biking is pretty difficult for me on account of the fact that I find it kinda boring. However, I'm trying to enjoy it. But first my neck has to get used to craning up to see where I'm going and my hands feel like they're bruised from the handlebars. Also, I bought some padded bike shorts after the ride too. I bet you can guess why I got those.

So, yes, I'm feeling pretty spunky. I'm stoked that I have these streak of feeling good going on. I had PT today and got in a great arm work out. I'm still working hard to not overdo it, but I'm hopeful that I'll feel awesome for seeing my nephews in a few days. :)

Friday, July 23, 2010

2nd day of working out!

I'm super proud of myself. I only did 30 minutes but I think it's great. I did 15 minutes on the elliptical doing the cross-training reverse mode and then 15 minutes on a bike. I took one of my thesis research books with me. I've found that one of the largest barriers to me going to the gym this past year was that I would tell myself I should spend that time doing homework. I'm doing my best to ignore myself when I talk myself out of getting exercise.

One of my favorite post-gym meals (when I go to the gym I do two small breakfasts) is half a whole grain and flax English muffin with a tablespoon of peanut butter and a drizzle of honey. I realized this morning that there are 200 calories in that meal. Kinda crazy! Stupid peanut butter. But, I have to keep in mind that my metabolism was increased from working AND I did burn 250 calories. I'm still only at 450 for the day.

I'm also planning to do a bit of housework today which, according to my wiii fit, counts as exercise. Hell, maybe I'll even take out the wii fit. I can't remember the last time we used it. I don't like it because it makes me sad when it tells me I haven't used it in awhile, I've gained weight, lost some balance, etc. Also, it makes this little "oh!" sound when you step on it. Not cool.

So, should I start using that thing or not? I've purposely not been weighing myself to keep my self esteem up. I've beeen feeling good about myself, that's all that matters....


Thursday, July 22, 2010

Wonderful day!

Today is looking like one of the best days I've had in weeks!

I woke up at 7 and I actually wasn't tired! Then I spent a few hours working on my thesis without any annoying hand/wrist pain. I still have a bit of a headache, but who wouldn't have one after 3 hours of reading and typing? If this continues to be a thing I'll make an appointment with my eye doctor. I think I'm due to be checked out anyway (Plaquenil and your eyes sometimes don't get along well).

I went to PT today. Since nothing in particular was bothering me today Don just worked some knots out of my neck/shoulders and ran me through some stretches. Then I got in the pool and actually got a workout! I did mostly arm stuff with a few minutes of deep-water work (all while chatting with Mary about eating naughty food while on vacation). It's amazing how much strength I've lost these past few weeks. As a result, I'm now tired. But it's fantastic to be tired because I DID something. Yay!

So, here is my mantra for the next couple weeks while I get back into things:
Don't get discouraged!
Don't over-do it! (I'm bad at this one!)

I REALLY wanted a burger for lunch but I resisted. Instead I had the SmartOnes Savory Steak and Ranch flatbread. It was no burger but it was pretty tasty. Six points for those of you watching those things.

I'm off to take a quick cat nap with Spartacus before diving back in to my thesis.

Wednesday, July 21, 2010

Today appears to be better :)

After going all day and night with a mind-splitting headache, an on-again-off-again fever and general crankiness I finally managed to fall asleep with the help of some NyQuil. The tylenol just wasn't working for me. I took two every eight hours(which I never do) and it helped my fever but not the headache. It was crazy.

I woke up this morning feeling TONS better. My throat is only slightly sore still, pretty much no headache, and no fever. Woot!

I'm hoping to go for a walk tonight with Sparty tonight in the sunshine (yesterday I couldn't tolerate light). I think it's going to be a great day today.

So, I've been writing down my calories each day on a notepad. I figure that if I'm honest with myself about what I eat I can see what my pitfalls are. Yesterday I was pretty bad. I was eating saltines all day to stave off nausea and a large amount of ice cream ("to soothe my throat". Yup, that's what I'm going with).

Anywho, my grand total for yesterday only came up to around 1800 calories. While my goal is 1500 (to lose weight), that's pretty good. I think it could have been worse. Luckily I prefer water and green tea sweetened with splenda. Also, I keep healthy microwaveable lunch food around in the event that I don't feel up to making myself a sandwich. Yesterday was SmartOnes Chicken Teriyaki with mixed veggies. Meh, but I ate it.

Today I'll get back on track- no ice cream and I'm going to make myself a sandwich with lots of veggies.

Have a good Wednesday!

Tuesday, July 20, 2010

To taper or not to taper...

My doctor decided not to taper me off of steroids since I had only been on them for a week. Yet, here I am with a killer headache, a fever, and nausea. Blech.
This is my first time on steroids, so I suppose it's best that I know now how my body reacts to them. Next time I'll taper off the drugs if I've taken them over three days.
I ended up canceling PT for the day. Tomorrow I'll start up physical activity again.

Thanks, steroids!

I went off steroids yesterday when my doc heard I was feeling better. Yesterday I also began developing a sore throat. Super. It's still bugging me a today and my glands are a bit swollen. So, I'm a bit cranky. C'est la vie.

PT at 11:30.

Sunday, July 18, 2010

Great weekend!

This weekend I have slowly begun to feel better. Walking was going well, so I upgraded to wearing my Sketchers Shape Ups for a little extra work out. I can't remember if I have PT or not tomorrow, but regardless I will be doing some sort of physical exercise.

This (almost) week long burst of steroids hasn't been terrible. No facial swelling or terrible weight gain. They do make me tired and a bit queasy unless I have a large amount of food with them. Also, I think I am a bit touchier as far as my feelings go and a bit irritable (poor Kevin). I am hoping that after I speak with my doctor tomorrow I can go ahead and stop taking them. If I'm feeling better I don't see why I would need to continue with them, right? I hate taking extra pills anyway.

I've decided not to be as bonkers about counting calories on weekends. Usually I do more physical activity on weekends as compared to during the week when I just work on my thesis. I still cooked healthy and utilized my subscription to Cooking Light:

Saturday night was pork tortas (Spanish for sandwices). WAY delicious.

And tonight we had black bean burgers.

Kevin was a real sport about the black bean burgers but will not be having the leftovers. He's just a carnivore, he can't help it. Meanwhile, I think it would be good to slip in some meatless meals during the week. Firstly, it's healthy because the meat is usually replaced with filling beans or grains. Yum. Secondly, it's cheap. Tonight's meal probably cost 5 dollars total for four servings. Third, one could argue that we saved a cow, but I actually doubt that. :)

There's an article on the topic of switching your diet to a vegetarian one called Effect of vegetarian diet on systemic lupus erythematosus but I can't read it due to MetaLib being a pain. From all the other websites on the subject it appears that switching your diet does nothing.

My doctor at Shriner's investigated this area as well. She did some blood test on me to determine what foods I'm "allergic" to. If you're allergic to something your immune system supposedly flares up in response to that allergen. And, in lupus, any increase in immune activity usually leads to the immune system attacking things that you need- such as interconnective tissues. For me, it came out to be dairy (including whey and casein), mushrooms, and corn. I ignored the mushrooms part because I like mushrooms too much. But, I did give up all things dairy. I ate cheeseless pizzas. I attempted to make a tofu cheesecake (it was awful), and I started to drink soy milk. In the end, I didn't notice any difference. The only big thing that happened is that now I think regular dairy milk is icky.

I suppose some people are willing to try anything to give up pain but I'm glad I can have pizza with cheese again. It gives my life joy. And, if you can't eat the things you enjoy what's the point?

Friday, July 16, 2010

Feeling a bit better!

These steroids must be doing the trick! Or, there's also the possibility that after 9 days of a terrible flare my immune system was ready to stop attacking me and I just happened to start steroids at the same time.
If I'm feeling pretty good tomorrow I'm thinking that I might do yoga in the morning. I've been waiting until I could use my hands and my wrists- it's hard to do downward facing dog (or upward facing dog, for that matter) with crappy wrists that hurt lots.
I've decided to run up to Spokane July 30-August 3. I'm hoping for good health until I leave and for the duration of the trip. I want to be a fun Auntie and I need happy hips to do that. I get to see Damien a lot during the trip and Riley (and his parents, heh) will be in town the 31st. It's going to be great. I foresee lots of t-ball in my future.
Cross your fingers for yoga tomorrow!

Thursday, July 15, 2010


I'm super tired today. I slept in, as I have been for all of this flare, but I still wake up and need coffee and a shower to get me moving at all.

I had physical therapy at 9:30 this morning. Don tortured me by working knots out of my legs and arms. It's quite painful. He says that it helps to be loosened up and it allows blood to flow easier. Whatever. He had an intern with him today who tried guessing my disease based on my symptoms. I even gave him the butterfly shaped rash hint and he still had to go look it up. He's only in his first year I think Don said, so I'll cut him a bit of slack.

The pool was hard. Before PT my legs (hips and knees) were tired. Then Don did his PT-ing to my legs and the felt like jello. I did about 30 minutes in the pool, using the easiest tools to add resistance. The worst was doing anything with my legs. I ended my session with a soak in the hot tub and some stretching.

Today will be day two of steroids. Two or three hours after I took my pill yesterday I became really nauseated and then I got really, REALLY tired. Supposedly the side effects will go away as I continue with the treatment. We'll see.

The rest of the day is dedicated to thesis work and resting my legs so I can make dinner tonight. Fish Tacos with Lime-Cilantro Crema (Cooking Light) is what's on the menu for the evening. I'm thinking a Hungry Girl Margarita will pair well with it.

Wednesday, July 14, 2010


So, I'm on Methylprednisolone, 16 mg, once a day. I just got them today. All I can say is that it tastes ucky. I'm a bit concerned because I know I got really sick on prednisone and I can see that name hiding in the name of these pills. We'll see.

Exercising and Eating Healthy

Actually, that first thing isn't really happening.
Due to this current long flare and other flares before that my physical activity has been limited. Kevin and I try to go for walks in the evening but it's difficult with high temperatures and my sun sensitivity. It's annoying to put on SPF 80 and a big hat just to take the dog to poop. So, I do what I can.

Ever since I started showing symptoms activities slowly began to become off-limits for me. I was injured Junior year of tennis and just never went back. I loved tennis. I haven't played in years due to a combo of sun sensitivity, cold sensitivity, and joint pain. I have a $200 racket(Probably $50 now) and a hopper full of tennis balls in our front closet. I lifted weights in high school with a group of football and basketball players- I loved maxing out and seeing the results. Running calms me but my knees won't take it anymore. It's incredibly frustrating.

For awhile I was trying to get into X Bike classes at my gym (Because my Rhuem told me to never, ever, ever run again). They're basically spinning classes but the handlebars move so it's a bit more of a full body workout. I was doing really great for awhile- I was improving my cardio (I have asthma so that's pretty cool) and my legs didn't give out after stepping off the bike anymore. I was really excited. Then one flare after another happened. Each time I would try going back to notice that I couldn't ride quite as hard or I needed to "swoop" a bit more than usual. I would start making progress, slowly, only to be disappointed with another week or two away from the bike. I'm debating whether or not to go back.

As a result, I haven't been to the gym in ages. For someone as cheap as I am, I feel terrible about the $$ lost in dues. Going while I'm feeling "off" isn't a good idea though. A small amount of creaking in my knees while I'm on the elliptical can very quickly lead to me gimping around the next day.

As I said in a previous post, I do attend PT twice a week. I go for 30 minutes with Don for stretches and such and 1 hour in the pool (usually with Mary, she's great). On good days in the pool I can get a great workout in. On bad days I let the water soothe my body and congratulate myself for even getting in the water- even if it's just to walk around.

Now, I know a lot of people wouldn't mind having an excuse to sit around. My doc told me that most lupus patients don't die from lupus complications. Rather, they die from turning into a fat-ass and developing heart problems. I'm a very active person and I LOVE working out, so I will NOT let this become me. I'm going to be very determined about this.

As a result of all this couch potato-ness I've decided to eat healthier. I used to be able to eat whatever I liked and stay steady at one weight (while looking very trim I may add). Now I'm heavier than I used to be. By no means am I fat or overweight, but I'm not where I used to be. I don't have the time during school or the energy (usually this) to do what it takes to maintain. So, I've subscribed to Cooking Light. This magazine is actually VERY good. I usually find a large handful of recipes in each edition that I want to try. Most are delicious.

Very recently I've started watching calories. I try to keep it at around 1500 a day. I use all whole grains and enjoy lots of protein and good types of fats (olive oil, omega 3's, etc). I still manage to sneak in a drink eat day too and usually something sweet. I haven't felt deprived, yet. For helpful tools aside from Cooking Light I've also been using Eat This, Not That , my mother-in-law (who works for Weight Watchers), and occasionally Hungry Girl. It's all a matter of personal preference, I think. For me the biggest keys are portion control (usually in terms of carbs or steak... or wine...) and eating food that TASTES good. I'm a cook, I won't eat something that tastes weird or has a funny consistency just to get back to a size 4.

Most of all I'm working on being happier with myself. Kevin still finds me attractive and I still get the occasional frat boy at school who checks me out. I just don't worry about the numbers- I haven't weighed myself in quite some time. There's no point in obsessing over that number when I can't really do much about it.

I'm just going to continue being proud of what I can do, like making a healthy dinner tonight and taking a walk on the trail with Kev and Spartacus.

Tuesday, July 13, 2010

Update- Doc called

My Rheumatologist called me back to chat about my flare.
He would like me to go on steroids for a week and call him back on Monday.

Day 9

Today is the ninth day of my current lupus flare. It's been a long nine days. I'm happy to report that my joint pain has been worse in the past. The worst joints affected are my hands and my knees. Towards the evening, of course, everything else starts acting up as well, but usually after I've finished making dinner. The fatigue is pretty noticeable, but thankfully I'm on summer break so energy isn't needed very much.

I made it to physical therapy today. I've been going to El Dorado Physical Therapy in Folsom since my car accident in November. I fell in love with aquatic therapy when being treated for those injuries and learned that it's a promising treatment and mode of exercise for people with arthritis (and Lupus!) as well. Today I couldn't go into the pool (no energy) but Don (my PT) worked to do something with my blood flow by squishing my back muscles (I don't know what he was doing, maybe if he reads this he can comment). I'm not sure if it did anything but we'll see how I feel tomorrow. He also popped my back (always a treat), massaged my knees and the surrounding muscles, and stretched out the muscles near my wrists. No definite change so far, but cross your fingers.

Due to the hand pain, I won't be writing much more. I purchased one of these puppies:

It's a paraffin wax bath. The PT office has a fancy one and I found it excellent for soothing the joints in my fingers right before it's time to write a paper. So, we found one at Walmart for 30 bucks.
Anywho, I'm heating mine up right now. I don't think I'll be working on my thesis tonight but I will be needing to do the dishes. Sad, right? Giving my hands a spa treatment in preparation of putting them in dishwater and scrubbing pans? Just a bit.

So, off to soak my hands, then dishes, then dinner. Cooking light, again. Ginger-Soy marinated Tuna with rice noodle salad. I'll let you know if it's decent.

Introductions and Medical History

I'm well aware that there are plenty of Lupus blogs out there. But, as I was lying awake last night- frustrated by a flare and the ineffectiveness of the Vicodin I finally caved in and took- I decided that I needed an outlet to discuss my journey, so here we are.
I began showing symptoms at age 12, while I was in middle school. It began with Raynauds (sensitivity to the cold with my blood vessels constricting) and fatigue. I was playing tennis and it began to interfere a bit. Wearing gloves and holding a tennis racket isn't exactly easy.
As I grew up my symptoms continued to evolve. Joint pain began eventually, along with muscle weakness. I began experiencing "flares"- periods of time over the course of a couple days to a week where I would be extremely tired and achey. But, I had no idea what they were. As a teenager, this was hard to deal with.
After meeting with a few doctors who insisted that I was a hypochondriac I was eventually referred to Shriner's childrens hospital in Spokane, WA. My doctor was Meredith Heick and she was the first doctor who actually explored why I was feeling the way I was. After some tests and a list of my symptoms was gathered she decided that I had "lupus-like" symptoms, but left me with a diagnosis of being ana positive and having some sort of auto immune disorder with a definite arthritis component. I was lacking the definite "butterfly" rash and Dr. Heick didn't want to give me a diagnosis that may make it difficult to get insurance later on.
Of course, lupus is what I had and what I still have. My current physician, Dr. Mansour of Cameron Park, CA (Marshall Rheumatology) basically told me "duh" when I told him that I hadn't been diagnosed but most doctors were leaning towards lupus. So here I am, 22 years old, with lupus.
I have been on a series of medications during this journey. To begin they were just treating my raynauds and my pain. I took niacin for a short period of time, supposedly to help my blood vessels. No matter how small the dose my body would flush bright red and I would feel warm to the touch. Not great for self-esteem in eighth grade, I can assure you.
After being referred to Dr. Heick I was placed on Vioxx. This was my miracle drug. Flares occured rarely and I could be a teenager. I played tennis, I exercised, I ran- it was like lupus never happened. Eventually, as many of you may now, Vioxx was pulled off the market. I hurridly switched to Bextra for as long as I could until the FDA realized that Bextra had the same terrible side effects. For awhile I lived off remaining Bextra samples I could find from friends' parents or family members. And then I ran out and was left with Tylenol.
Our next shot was with hydroxychloroquine. I'm still on this medication to this day. It works pretty well for me, most of the time.

So, this blog is going to be my journey and a way to share my progress and my regressions. I have chosen the blog title because of my recent struggle with my disease. Over the past year I have lost a lot of my strength. Each time I make progress- losing some weight, getting stronger, exercising regularly, keeping a clean house- it seems that I get sick or have a flare. I then back off, relax, and regress. Then I start at the beginning again.

DISCLAIMER: I should mention that everyone is welcome to read my blog. Friends, family, and strangers are all allowed to comment and to follow my posts. However, I am going to be frank with my symptoms and my beliefs. I may whine, I may swear, and I may talk about how lupus is impacting my life. As a warning to my family members who are squeamish about any discussion of sexual related matters- I may bring up if my symptoms are negatively impacting my marriage or if I'm having concerns about our future as parents. I'm not ashamed to share these things, I hope you won't be ashamed to read them.

I look forward to having an outlet.