(click the above link to take a ride on a roller coaster I remember from my youth)
So, lupus is a disease of ups and downs. Since my last Benlysta chemo infusion, (March 29) there have been ups! Specifically, since then I've been able to run a total of 50+ miles! However, since this past Sunday, (April 14), I've been able to run a total of 0 miles. I did go out on Tuesday, April 16, to run in honor of those touched by the tragedy at the Boston Marathon. Sometimes it's rough to get a run started, but usually if I just keep going, it gets a lot better around mile 2 and beyond. Tuesday, however, I just could not make the body go very far.
It's amazing how quickly a lupus flare can set in, and this week I was reminded of that very fact yet again. Each day you feel a little worse as the coaster climbs the hill and then you wake up one morning and BAM~you feel like you were hit by the coaster. Joint pain and swelling, facial rash, FATIGUE, fever, headache, nausea, chest pain, dizzy, disoriented, blah, blah, blah...
Yesterday, other than an ultrasound appointment, I spent most of the day in bed. This morning, after over 12 hours straight in bed, I got up and got a shower. Then, I took a rest. I ate a bowl of oatmeal. Then, I took a rest. I did go to see my PCP. Then...you guessed it, another rest. Do to some of the flare symptoms I'm having, my rheumatologist (that's my lupus doctor) wanted my PCP to listen to my heart and lungs. Thankfully, all sounded OK there, so the chest pressure/pain was dubbed costochondritis--an inflammation of the juncture of the ribs and breastbone. Oh what fun it is to ride on the lupus roller coaster! At the PCP's office I was given...the dreaded steroid injection.
I prefer the injections over increasing my oral steroids. (I already take a small dose of oral steroids every day.) The side effects--rapid heart rate, insomnia, nausea, headache, water retention, emotional response, jitters, etc--don't last as long for me when I get an injection. All of those side effects are still present for a day or two, however. When I checked in at the PCP, my BP was 100/60, which is pretty normal for me. My pulse was 70.
My weight was...well, that's irrelevant.
At home, an hour after the injection, my vitals were a little higher:
The good news is that the side effects should be gone in a couple days, but the positive effects of the shot--kicking this flare in the derriere--should last for a while. And I'll get another steroid boost with my next Benlysta, which is next Friday.
This has been a busy month of appointments, rehearsals, concerts, and so on. I have the blessing of directing a choir of women, The Daughters of Grace. This is a volunteer choir made up of over fifty ladies of all ages from Greene, Washington, and Fayette Counties in PA. We're holding a fundraiser concert for a local charity--Greene County Young Life--TOMORROW NIGHT. That's right, tomorrow. So, it's not possible to crawl in a hole and hibernate until next week.
As much as I'd like to cash in one of these...
...tonight is our dress rehearsal and the show must go on. I know God will give me the strength to fulfill the calling He has placed upon me. And I know without a doubt part of His calling is for me to direct this choir! I also know that part of His calling is for me to RUN for His glory and to spread awareness about Lupus. At this point, I am hoping to be back to running (slow and steady) by early next week. I am still planning to run the 2013 Capital City Half Marathon in Columbus on May 4th.
(click on the above link to learn more about the race)
So, why did this lupus flare have to happen now? Well, better now than May 3rd! Seriously though, I don't know why. I am trying to manifest more of the Fruit of the Spirit in my life, and this is certainly an opportunity for growth in that area.
Gal 5:22-23
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.
(click on the above link to listen to the song)
I Will Wait by Twila Paris
I will wait on the Lord
I will wait for His word
Because I fear His holy name
I will wait
I will wait
I will wait on the Lord
I will wait for His word
Before I move
Before I speak
Perfect wisdom I will seek
And I will wait
As long as it takes
I will wait on the Lord
I will wait for His word
Because I fear His holy name
I will wait
I will wait
I will wait on the Lord
I will wait for His word
Before I move
Before I speak
Perfect wisdom I will seek
And I will wait
As long as it takes
I will wait on the Lord
I'll update early next week about how things are going.
Join me in the journey...
(click on the above link to listen to my latest "theme song")
