Sleepy Lupie

A while ago I posted that I implemented a 10:30 bedtime so that I can get 8 hours of sleep, but that still didn't seem like enough.  I've been trying to get 9 hours of sleep, and I feel much better in the mornings.  On weekends I'll sleep a little longer and even get some naps in.  Sleeping makes me feel better, but it also makes me feel lazy...like I don't have time or energy to do anything else.

I've noticed the spoon theory coming into effect more.  If there is an event coming up, I need to make a conscious effort to save up some spoons for it.  If I overdo it one day, I need to make time the next day to recover.

- a little lupie -

One Lucky Lupie

Have I mentioned how wonderful my lupettes are?!  I really am lucky to have such a great support group around me.  I have aunties who travel the world and bring me back seaweed from Korea to help with my hair loss and meltaway pain relievers from Sydney because I can't swallow pills.  Friends and family constantly ask how I am doing, and I am always happy to hear that people are reading my blog :)

Remember my bestie?  We went out for her birthday today, and she bought me a gift!  Even though we haven't spent much time together in the past couple months, she always knows just what I need.  Back in January when I first got diagnosed, there were a number of things I wanted to get -- a pill box, a book on lupus, and a pillow to help me sit up in bed.  Without even mentioning any of this to her, I get a lupie grab bag of exactly that and a bunch of other lotions and ointments to help me with my joint pain.

I had been coming to terms with the fact that a cane would help me on days when the joint pain in my knees and toes make it difficult to walk, and today, bestie gave me a cane!  She didn't just go out and pick out any cane...as is typical with her, she did research on how to fit a cane, different handle styles, and even took into account how "fashionable" it was.  I didn't know so much went into buying a cane!  She even talked to other cane users to learn about what characteristics to look for.  After a week and a half of visiting stores and doing research, she got me an adjustable offset handle walking cane with a cushioned grip and strap.  She is always so thoughtful (Though I joked with her that where our gifts once consisted of makeup and cute tops, we have moved on to pill boxes and canes.  My last gift to her was a floor cleaner.  Not the most glamorous gifts, but practical and very much appreciated!).

I also want to give a shout out to all the other lupettes out there.  I appreciate all the concern you have shown and the time you have taken to learn more about lupus.  I really am one lucky lupie!

- a little lupie -

Maybe Not So Super...

My husband used to always wonder why I never seemed to catch his colds, and I would jokingly reply by putting my hands on my hips, striking a pose, and saying it was because of my..."Super Immune System!"

When I got diagnosed with lupus, I realized that I did, in fact, have an over-active immune system...however, maybe it wasn't so "super".  Lupus is an autoimmune disease meaning that the body attacks itself.  Your immune system is supposed to help fight the "bad" things in your body, but with autoimmune disease, it starts attacking the "good" things too.

The new medication I am starting is azathioprine.  It is an immune-suppressing drug which will try to calm my immune system and keep it from attacking my own body.  The danger, of course, is that if it suppresses my immune system too much, I am at a greater risk of infection and cancer.

I am starting at a low dose (50 mg) and will be slowly ramping up to the necessary dosage (not sure what that will be yet).  Rheumy wants to start really low since I am heterozygous for a gene that could lead to excess drug toxicity and land me in the hospital.

Another worry I have about starting the medication is that common side effects of the drug are nausea, vomiting, diarrhea, and stomach pain...none of which sound fun at all.  I waited until the weekend to start the medication so that I would be in the comfort of home in case I suffered from these side effects, and other lupies have suggested taking the medication at night so that you can sleep through the nausea.  I have been feeling slight nauseated the past week, and continue to these past few days, but it is hard for me to tell if it is from the medication or not.  Either way, it is not too bad, and I haven't experienced any vomiting.

I'm hoping that the medicine will help balance my immune system and allow me to get off the prednisone.  It may take a few months before we see any results, but I'm keeping my fingers crossed!

- a little lupie -

So, I don't wanna brag, BUT...

...really, I do!

I swallowed all of my pills this morning...including my two hydroxycholoquine tablets!  Yay me!  Now that I was able to do it once relatively painlessly, I'm hoping it'll help me continue to do so.  Hopefully next time it will take me less than ten minutes...

- a little lupie -

So Proud of Myself!

I took my first dose of azathioprine this weekend, and I am proud to say...I swallowed the pill! For anyone who has watched me try to take medicine, you know this is no small task. It usually takes me 10-15 minutes as I sit staring at the pill and try to visualize swallowing it, even doing some practice gulps. Even if I crush the pill or chew it, I need to psych myself up to dealing with the taste and gulping it down. I am getting sick of chewing my hydroxychloquine pills, and just the taste of it initiates the gag reflex these days. It has gotten to the point where I need to gag before I can even swallow the chewed pill.

Over the last few months, I've been able to swallow my prednisone regularly, my levothyroxine sometimes, and now my azathioprine a couple times. It is progress! I'm hoping to master these three small pills soon so that I can "graduate" to swallowing my hydroxychloquine without chewing.


- a little lupie -

Rheumy Time

The joint pain has been acting up the past few weeks, and rheumy wasn't surprised based on the high sedimentation rate seen in my blood work. The  Erythrocyte Sedimentation Rate (ESR) test is a blood test used to detect and monitor inflammation in the body. The test measures the rate at which red blood cells (RBC) settle and is measured in millimeters per hour. The sedimentation rate increases with more inflammation. The normal rate 0-15 mm/hr for men and 0-20 mm/hr for women. My latest blood test was 45 mm/hr, but rheumy says that the rate is probably slightly elevated because of my anemia. Even normalized for the anemia, however, it is still high.

The joint pain in my knees was back this past weekend. The pain is so bad that it feels as though I can't even handle the weight of my body. It makes it difficult to sit, stand, and walk. I've finally come to terms with the fact that I may benefit from using a cane when this type of pain acts up.

Rheumy asked me if I had given thought as to the additional drugs we had discussed at the last appointment (azathioprine or methotrexate). I told him that between the two, I was leaning towards azathioprine. Rheumy said that there was one more option, sulfasalazine. The drug is is more often used for arthritis, and since that seems to be my biggest symptom right now, it would help with the inflammation and joint pain. The down side is that it wouldn't help with any of the other lupus symptoms if they came up. If I were to flare and there was other organ involvement, I'd need to start another medication in addition to the sulfasalazine. Also, a huge deterrent for me is that they are huge pills and I may need to take up to six a day.

In the end, I decided to go with the azathioprine. Some of the side effects are stomach pain and nausea, so rheumy suggests waiting until the weekend to start taking the medication (in his words, "you don't want to go out and be throwing up everywhere" -- nice...). We are starting with a very low dose due to the fact that I have a gene that doesn't metabolize the drug properly, so hopefully this decreases the chance of side effects I might experience.

I picked up the medicine from the pharmacy and was relieved to see that the pills are relatively small. Bigger than my prednisone and levotyroxine, but smaller than my hydroxychloroquine. The pharmacist also confirmed that it would be okay to crush or chew the pills.

On the bright side, my blood tests indicate that my kidneys and liver are doing okay. My next visit is in four weeks, so hopefully we'll see some improvement.

- a little lupie -

Lupus Cakes

Lupus sucks...but that doesn't mean it can't be yummy!



- a little lupie -

May is Lupus Awareness Month

One of the biggest reasons I started this blog was to raise awareness of lupus.  Honestly, before I was diagnosed with it, I had absolutely no idea what it was.  I didn't know what the symptoms were, and I had no idea that these random things I was experiencing (joint pain, fatigue, hair loss) were caused by this thing called lupus. I was lucky that my doctor was astute to these symptoms and was able to quickly get me tested and diagnosed so that I could start receiving the treatment I needed. While I don’t wish lupus upon anyone, my hope is that my experiences can help others suffering from the disease and those around them.

For more on lupus awareness month and events going on in your area, check out The Lupus Foundation of America and The Lupus Research Institute websites.

- a little lupie -

Joint Pain

Still experiencing joint pain.  Lately it has been in my wrist and fingers.  It isn't too bad, but it does make it difficult to do simple, everyday things (brush teeth, lift bags, turn on faucet, drive, type, etc.).  I also have some joint pain in my toes making it sore to walk and causing me to hobble/waddle around to try and bend my joints as little as possible.

Even though I am back up to 5 mg of prednisone, it looks like things aren't getting better.  Guess I shouldn't put it off any longer...looks like I'll need to start a new medication next time I see rheumy.  :(

- a little lupie -