I recently participated in a very selective research study. I was, in fact, the only participant. Unfortunately, the method of treatment being studied was a complete failure. It turns out that telling your body, "I've had enough of your bulls*@#," is NOT an effective treatment for lupus.
Major bummer.
Deja moo...the feeling you've experienced
this bull crap before...
Since my last update, things have been good...bad...and better.
June and the first part of July were mainly good. I was feeling the benefit of the rituxan infusions I had in April and early May. I was running and exercising, getting stronger and building up muscle tone. Of course, I was still taking my daily lupus medications and fighting the "usual" symptoms, but I'm getting pretty good at that.
The second week of July, I participated in the Jim Dunn Memorial Twilight 5-Miler Run. It was held on a Friday evening on a rail trail along a river in a nearby city. I'd never run on the course, so that made it kind of exciting. In actuality, the trail was kind of boring, except for a 1/2 mile portion which went through woods. It had rained a lot that week, and that portion of the trail wasn't paved, so it was MUDDY, and studded with tree roots. It was dark there, too. Even though I was nervous about slipping and getting hurt, I enjoyed that part of the race. It was kind of exhilarating to run as fast as you could through the dusky, wet woods.
Of course, when I say fast, I mean fast for me.
However, my pace has improved some. My goal for the 5 mile race was to complete it in under an hour. I had never run 5 miles in less than an hour.
I met my goal, with about a minute and a half to spare! I felt great after the race, too, so that was a win for sure!
#LHandSign
A few minutes into the race. I'm in the blue hat. You know, the one waving at the camera...
I continued following my training schedule for the half marathon I was hoping to do in early August.
Each week was made up of several shorter runs, from 3-5 miles each, and two strength training sessions at the gym.
Each weekend, the length of my
long run would increase. Sometimes I would do them on Saturday mornings, and sometimes on Sunday evenings, depending on the weather.
Here's Fflewddur watching out the window as I returned from a long run this summer...
Jack says, "Hey mom...can I come, too?"
On the week that called for a 10 mile long run, I completed a virtual race (I paid the entry fee, completed my miles and logged them online, then I received a finishers' medal and t-shirt.) The race was the Colorado Women's Classic. Here's the bling...
Here I am finishing the 10 mile run. Ben was waiting for me at our mailbox. I didn't realize he was filming until I was finished. Normally I would stop at our mailbox, but my Garmin indicated that I needed to go another .05 of a mile! So, I ran past him a bit.
Then, a little later in July, I ran a 5K held in conjunction with the Vacation Bible School at a local church...a very local church! The race actually went right past my house. It's the only race I've ever done that I could walk to! Actually, I did a good bit of moving my body prior to the race. I was scheduled for a long run of eleven miles that weekend, so I decided to get up really early and do some of the miles before the race, do the race and add those miles to the day's requirements, and then add a few more miles on the way home.
I actually did more than six miles prior to the 5K, which didn't start until 9:30 a.m. Then I did the 3.1 miles of the race, and finished up with about 1.8 miles on the way home. I finished in 4th place overall! Well...there were not very many participants, but I was pleased with my time of about 37 minutes. That's not my fastest 5K, but it was brutally hot, sunny and humid that day.
I applied a lot of sunscreen, but with all the sweating and the dangerous UV rating, I still got a sunburn.
Sunburns are very bad for a person with lupus photosensativity.
Like me.
As much as I tried to keep it down, lupus decided to rear it's angry head and I started to flare.
Life is finally going along with at least a small degree of what I would consider normalcy, and then...
...lupus strikes again.
I hope this photo doesn't offend anyone. I just found it very funny at the time,
and the laugh it gave me was a very great relief.
To stop the flare, I received a high dose steroid shot. It did help some, but didn't completely alleviate my increased symptoms.
It was also around this time that I learned I was seriously anemic again. I'm always somewhat anemic--the anemia of chronic disease. This time, however, my iron stores had gotten very low. It helped explain the fatigue I just couldn't shake, and I was scheduled for two IV iron infusions of injectafer, which is the only IV iron preparation the doc has found that I can tolerate. The IV iron makes me feel yucky for a few days after the infusions, so I had to cut back a lot on my training for the half marathon. Which did not make me very happy.
The infusions went without incident, and after getting them I still had two weeks to resume training for the half marathon.
Then...
Another completely unexpected flare (or possibly some very weird unidentified viral agent) put me in the hospital for a couple of days and left me completely drained. I suddenly began running a very high fever (which should be nearly impossible with the immune suppressing medications I take.) I also had sweats and chills, chest pain, an awful headache, and severe pain in my muscles and joints. I'm also passing protein in my urine again. This flare also left me recovering from a lumbar puncture--or spinal tap (to rule out meningitis)--which prevented me from trying to run at all (upon advice from the ER doc) for a week...during the final full mileage week of my training.
Perfect timing, lupus.
I had some side effects from the lumbar puncture, such as a bad headache, along with stiffness, numbness and pain in my lower back and left leg.
Fflewddur, helping mama feel better...
It seemed the half marathon was just slipping...slipping...slipping...right out of my grasp. I'd had a firm handle on my training. I was feeling prepared. I had worked so, sO, SO hard! And then...lupus. The story of my life. Yeah, I had a pity party for a little while.
And then I decided to put the situation in God's hands and allow Him to direct me.
A few days before the half marathon, I felt a peace about going ahead with it, cautiously.
"Sometimes God will put you in a battle empty handed so that when you do get the victory you'll know it wasn't you, but Him."
But thanks be to God! He gives us the victory through
our Lord Jesus Christ.
~ 1 Corinthians 15:57
The Thursday before the half marathon, which was on Sunday, I was able to grind out four miles, and felt okay afterwards.
So, Ben and I made the trip to Columbus, Ohio, (where the race was being held) and we prayed and went to bed early and tried to rest and...got up at 4:30 a.m. to be at the race site before 6:00. The race was scheduled to begin at 7:00, and other than TOO FEW PORTABLE TOILETS, (hint, hint race directors) things went really smoothly from packet pick up to warm up to starting line.
Getting my tunes in line...
"Let us run with perseverance the race marked out for us, fixing our eyes on Jesus..."
~ Hebrews 12:1-2
Waiting for the starting horn.
And we're off...slowly. It took a little while to get to the starting line because the trail was narrow.
Bye Ben...see you soon!
Mile by (mostly) shaded mile, the Lord and I progressed along the course.
The course was well-supported, with plenty of water stops, strategically placed portable toilets (which I thankfully didn't need) and only a few hills.
The Mount Carmel Columbus Half Marathon/10K/5K is held at a Columbus park called Three Creeks/Sycamore Fields. There are miles and miles of trails there.
It was a beautiful course, especially in the few minutes after the start, when it was till misty and the sun was coming up. There were several lakes and creeks to cross, and they were misty and serene. Lots of geese flew overhead, and I saw a heron and a crane. A bunny hopped across the path in front of me at one point.
These guys kept me company for a while...
via my headphones.
I was able to run almost the entire course, up until mile 10, when something weird happened with my right knee (by weird I mean painful) and...the toenail of the third toe on my right foot came away from the nail bed. I finally got my sock into a position the toenail could tolerate, told my knee to shut up and suck it up, and slowed my pace to a jog.
Until mile 11, when I couldn't stand the knee pain anymore. So, I slowed to a fast walk, repeating the same song on my playlist about 3 times, and made it through to mile 12.
I tried running again then, made it about a quarter of mile, slowed to a walk again, and at 12.8 miles I picked up the pace and ran to the finish line, where Ben was waiting.
I know, I know...at this point, some of you may be saying, "Why would you want to do this to yourself? What benefit is there for you? Couldn't this be very dangerous for you?"
"Not everyone will understand your journey. That's fine. It's not their journey to make sense of.
It's yours." ~ Kara Goucher
My previous personal best time for a half marathon was 2 hours and 57 minutes.
My finish time for the Columbus Half Marathon?
2 hours and 54 minutes.
BAM.
"Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think." Ephesians 3:20
He must increase, I must decrease.
More bling...just with the wrong date...
13.1 miles in a half marathon.
In my swag bag from the half marathon...
a smile on a stick!
I receive daily Bible verses by email from my friend and former neighbor Mr. Black. In the days leading up to the race, some were particularly fitting...
Habakkuk 3:19
The Sovereign LORD
is my strength;
he makes my feet like
the feet of a deer,
he enables me to
go on the heights.
Psalm 34:1
I will extol the LORD
at all times;
his praise will always
be on my lips.
Isaiah 26:12
LORD, you establish peace for us;
all that we have accomplished you have done for us.
Psalm 21:2
You have granted him the
desire of his heart
and have not withheld the
request of his lips.
Matthew 7:7-8
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened."
Isaiah 30:15
This is what the Sovereign LORD, the Holy One of Israel, says:
"In repentance and rest is
your salvation,
in quietness and trust is
your strength..."
In the days (hours really) since the race, God has been gently telling me that this is the last half marathon for a while. I have a feeling of peace about that. The distance is just too hard on my body for now, while trying to deal with the lupus and the medications I need. It's really difficult to keep myself in racing shape in between rounds of chemo. I'm still planning to do the EQT 10 miler in October, and possibly a 15K (9.3 miles) in November as well as some 5K's (not my favorite distance.)
We'll see how it's going.
"I am the Lord your God, who teaches you what is best for you, who directs you in the way
you should go."
~Isaiah 48:17
I'll be taking another round of rituxan infusions on August 14 and 28. And then...probably again in November. Originally my doc had planned to move the treatment schedule from every six months to every four months. But I'm continuing to flare when the rituxan wears off, so she feels we may need to do the infusions even more often. Which kind of stinks, but hopefully it can keep the flares at bay and that will keep lupus from damaging my organs further.
I've been enjoying my zinnias very much this year!
And as I'm recuperating from my treatments later this month, I'm sure Fflewddur will have a few cuddles for me...
Power napping...
Cuddles from Gemma, too...
And having finished up my umpteenth reading of "The Lord of the Rings," I'm now on a Jane Austen kick. So...while I need to be resting, I am planning to spend some time at Pemberley, and Mansfield Park, and Northanger Abbey...
When I update you next, I will (hopefully) have
been at the ocean...
Thank you for joining me in the journey...
Click the link to listen to the song and see the lyrics
