Ode to Flare (up)

(Nerd sidenote: thought this picture was appropriate cause of all the recent solar weather :) )

Flare-up. Or as most auto-immune disease sufferers say: a flare.

Flare-up (compliments of Webster)

1: a sudden outburst or intensification

2: a sudden bursting (as of a smoldering fire) into flame or light

Autoimmune diseases are interesting creatures. They vary incredibly from patient to patient. One can test positive for one disease and negative for another, yet still have symptoms of that disease. New symptoms can pop up and symptoms can disappear completely. A large majority of people with autoimmune symptoms thankfully live a large portion of their lives with minimal symptoms and then a flare occurs and you're just miserable.

When it comes to sharing about my disease, I always think: "should I really post this, is is too much information?".

But after realizing that I would tell everything that I post to anyone who asks (this isn't a secret!), I post:

1) To share what God teaches me through my disease
2) To help myself process what I learn through each up and down
3) To help people understand autoimmune disease better
4) To attempt to encourage those who are suffering, or who know someone who is suffering

I haven't had a flare since last fall (it was a LONG flare, but settled by January). However, I've been flaring for almost two weeks now. For me, a flare means my joints hurt, I run a low grade fever almost constantly, I start feeling worse as the day grows later and I have no energy. For me, which joints are affected changes from day to day. For this flare - it has been my fingers, wrists, toes, ankles, and shoulders (upper back), with a dose of my SI joints thrown in every few days or so. Flares can last days, weeks, months. It is always different and you never know exactly what to expect or when your immune system is going to start behaving again.

I am thankful that my flares only worsen in the evening, which means I can still be productive at work and feel fairly normal until about 4pm (woot for being a natural morning person!). I've found morning workouts are okay as long as they are not too intense and I stagger them every other day; in fact, they help work out some of the joint stiffness. I crawl into bed around 7 or 730pm because usually I am hurting so bad by then that it takes awhile to fall asleep and I usually wake up during the night hurting. I curtail evening activities, because while I have gotten pretty good at pretending I feel okay so I can still have a decent social life during flares, it does take a lot out of you!

For this flare, my rheumatologist put me on some oral steroids for two weeks (IV steroids didn't work last time and we're still not sure if my usual steroid injections helped in making my back go all wonky). Four days into the steroids, I've seen a slight improvement...not as great as I would have hoped. The next step is tweaking my immuno-suppressive meds - according to the doc I still have a lot of wiggle room. But we just tweaked them last year too...I don't like it when my body destabilizes so quickly. Silly body.

I've noticed during this flare, that I am handling it better spiritually and emotionally. Trusting God more, not getting as frustrated when I have to cancel hanging out with a friend 'cause I just don't feel like putting on a smile-mask anymore. Taking one day at a time and doing what I can each day. Now, I am not perfect. Oh no. Believe me, there have been some tearful nights lately where I just HURT and I am sick of the struggle. But God is good to remind me that there is a reason for all of this (of course, He hasn't revealed that yet, but there is still peace in the thought :) ). I am learning so much about Him. He doesn't give me more than He and I can handle. And His plan is more incredible than I could ever imagine. So I focus on that when I start hurting really bad (and then pray to fall asleep REALLY quickly ;) ).

So, here's to this flare ending shortly. Don't take good health for granted. Do what you can.

Swim breakthrough? Mayhap...

I'm hesitant to blog this, because it was only one workout, but it was the first time in a LONG time that I finished a swim workout not completely disgusted with the sport of swimming (I'm telling you, it's a love-hate relationship).

I did my 300 yd warmup. I have a race in a couple of weeks and the swim is 300yds. So I decided to time it...so much for the warmup :). I did it in 6:40, which is just a tad over 1:06 per lap. A pretty decent time for me. I did my drills -I've been really focusing on my rotation in the water. I am more comfortable rotating to my right than my left and I think that's causing some issues in my stroke. I have no idea how many yards of drills I did, I was just trying to create muscle memory by repetition. Then I started stroke count lengths (remember, a lap is one circuit of your lane, a length is just down to one end). The fewer strokes I use during one length means that I am swimming efficiently (i.e. gliding and not wasting energy by moving my arms too much). My stroke count has consistently been between 26-28. That's high.

I pushed off from the wall and started counting strokes (every time a hand enters the water, that's a stroke). I focused on rotation, high elbows, hand entry - all the stuff I have been drilling). I reached the wall...at 21. What!? WHAT!? 21? Fluke. Got to be. I turned around and headed back. 21 again. And again. And again. For at least 300 yds I hit 21 strokes on every length. And celebrated each 21 with a little "oh wow!" or "oh cool". Out loud. Pretty sure the rest of the pool thought that the girl in the purple swim cap was just a bit too excited about making it from one side of the pool to the other. I timed a couple of laps and I was going at a 1:05 pace. That's a big difference from my 1:12 pace a few weeks ago. I tried to speed up my pace but my stroke count quickly increased, so I obviously don't have the whole balance between stroke count and speed down yet.

I hope it sticks :). And what a blessing - here I have been whining and complaining and feeling like I have reached the end of my rope with swimming and I get this little glimmer. Thanks God.

More books!

1) Birds of a Feather by Jacqueline Winspear (#2 in the Maisie Dobbs series)

I stumbled up on this book in Half Price Books when I was stocking up for my trip to Moscow. It's a mystery and the first few pages read like an Agatha Christie (LOVE) so I bought it. I didn't realize it was the second in the series, but I didn't feel like was missing out on anything. This was a great book and I intend to read the rest of the series. Maise Dobbs is a detective/psychologist in England just after World War I. She was a nurse during the war and has her own memories to fight as she works to help others. This particular mystery revolves around Maisie's client, Mr. Waite, who wants her to find his 30-something daughter, Charlotte, who has decided to run away from home and the tight leash he keeps on her. Throw in a few murders of Charlotte's friends and Maisie is afraid she won't find Charlotte in time. The plot was sufficiently intricate, mixing in colorful and likeable characters, the feel of 1920s England recovering from a horrible war, mystery, and suspense. Great read.

2) The Immortal Life of Henrietta Lacks by Rebecca Skloot

After seeing this book recommended on several blogs, I decided to give it a shot.

This book almost got it's own post because it is absolutely incredible!!! I can't wait for more of Ms. Skloot's writing, because she is talented! This is a true story of Henrietta Lacks who had her cancerous tumor cells harvested in a time (1950s) when it wasn't required to get patient consent for...well...anything. Her cells never stopped dividing (hence the term "immortal") and that fact allowed scientists around the world to use them to advance medicine to mind boggling levels. Modern vaccines? Modern culture techniques? Thank Henrietta. And that's what this book is about, Henrietta. Her cells (called HeLa) are so well known, but she is not and that is what Ms. Skloot set out to rectify. And rectify she did. This book is wonderful balance of personality and warmth and science and hospitals. Her rich character descriptions of Henrietta and her descendants, her descriptions of American medicine in the 1950s-70s (the good, the bad, and the extremely disturbing and ugly), the honest and transparent emotions of the Lacks family as they learned of what their mother's cells have done for science, it's just a solidly written book. Don't let the cell talk scare you away, it's well balanced and explained incredibly well in layman's terms - you'll find you've learned about cell biology before you realize it, but more importantly, you will know the Lacks family. Read this.

3) The Long Run by Matt Long

My friend Erin V. recommended this book to me. It's a true story of New York firefighter Matt Long. He's a runner and triathete and one morning while he was cycling to work, a city bus made an illegal turn and crushed him. And he lived. His story is inspiring and real. That's what I loved about it the most - the realism in this book. Mr. Long didn't cut out the gory details (his descriptions of his injuries had me reading one handed - one had on the book, the other over my gaping-in-shock-mouth). He is real in his descriptions of the vulnerability and humiliation he experienced during rehab, the mental struggles involved in dealing with new physical limitations, and the vast hurdles that were set before him to overcome. Inspiring.

The roof...the roof...the roof leaks?

Yup. Well, rather, it did.

This has been an ongoing issue for just over a year. I discovered the first leak last July (the roof was replaced a bit after Hurricane Ike, so it's just over two years old - it definitely shouldn't be leaking yet). My awesome realtor tracked down the company who did the roof, they sent some guys out - who sealed the old gutter holes they had left unsealed (heavy rain-fills gutters-rain goes into unsealed gutter holes-leaky roof). My neighbor and I had taken care of another more minor leak earlier last July - I climbed into the attic and sealed around a vent and he climbed on the roof and sealed it there - and then informed me that they had used kitchen tile sealant (the white stuff) instead of roofing sealant (the black stuff). I should have known then it wasn't the end of the leaking problems.

The gutter hole leak did some decent drywall damage in my bedroom, so I filed the claim with the roofing company since everything was still (thankfully) under warranty. Then I got sick and about 6 months went by before I was able to follow up with it. In January, I started what ended up being a 7 month process of trying to track down someone who could help me. The company is called Aspen Contracting and they subcontract out to smaller companies all over the country. After months of their subcontractors not calling them back, or sending out a painting crew to my house instead of a drywall crew and me refusing to let them just paint over the damage, I finally reached an awesome woman in their main office, Kathi. After I took about 15 minutes to recount everything that had happened (I kept a log of all the calls that I made to the company and who I spoke to), she flat out interrupted me and said "honey, we are going to fix this". After several calls to their non-responsive subcontractors in this area, she finally gave up and told me to find my own contractor, fax her the quote, and she would write a check. I did and she did and the money is sitting in my account ready to pay the contractor who is coming on Wednesday to fix the damage.

Oh, but it's not over yet :). During the month of June/early July this year while I was working with Kathi to figure something out, another leak developed in my living room. We hadn't had rain for months (literally) so I am so glad this happened when I was in discussions with the company. I emailed Kathi and she told me to have my contractor come out and take a look and then send me the quote. It ended up being cosmetic and due to rain blowing in through a vent, so easy fix. AND THEN (oh yeah, it goes on), my housemate reported there was a leak in her bedroom. So I told Kathi and she sent out a great (they drove from about two cities away to get here) crew who did a full inspection of the roof, found two leaks, sealed them, tested them, the seals failed, so they ended up replacing two of the attic fans and the flashing around the fireplace. Right before the storms stirred up by Tropical Storm Don started coming through. And I am happy to report, a ton of rain and no leaks!

Throughout this process, I have been very thankful that it has gone so smoothly. You may think that all that I just wrote above isn't the textbook description of "smooth" but you and I both know that it could have been a lot worse. My biggest fear was that I would have to get legal on them and I really didn't want to do that, so I am thankful God answered that prayer. And also that Kathi works at Aspen. And that the company has been handing over money to pay for all the repairs (yes, that's what they should be doing, it's just nice that I just haven't had to argue with them about it or even ask).

Bottom line though, if you need roof work, don't go with Aspen Contracting. Their main office is competent and professional, but the three subcontractors I had to deal with initially were decidedly not. So until Aspen Contracting subcontracts out with some reliable companies, avoid them.

Nephewisms

I got a text from my sister today. She had taken the boys to the library and apparently John Michael ate too many beans this morning, because he was tootin' all over the place. When Monica told him that he needed to learn to control his gas when they are in public, he looked up at her and responded:

"Mom, this is the way God made me and I can't do anything about it!"

Pretty sure Monica broke the "quiet" rule in the library after that :)

Last launch of the Space Shuttle

Sorry for the delay on this post - I had technical difficulties with the video I took of the launch. I gave up and posted the footage from NASA of the launch.


I cannot believe I had the privilege to witness the last launch of the Space Shuttle.

My friend Lisa entered the lottery they had here at work for passes to park on-site at the Kennedy Space Center and she received a Turn Basin parking pass - about 3.5 miles from the space shuttle launch pad. And she invited me and two other friends to go with her. An 18 hour drive later, we were in Vero Beach, Florida and ready for the launch!

Launch was on Friday, July 8th at 11:26am. So we decided to leave our hotel at 4am just to make sure we got there in time :). They were expecting about 750,000 people, so we didn't want to get stuck in traffic. Since we were so early, there was minimal traffic and we had no issues getting on-site as we all had our work badges with us (which meant we also got free entry into the KSC Visitor Center later that day to buy more souvenirs :)). We were parked at our site by 6:30am.

Driving past the Vehicle Assembly Building (where the Solid Rocket Boosters and External Tank are attached to the Space Shuttle)



Atlantis - 3.5 miles away



We arrived so early, that the security wasn't yet setup around the press area, so we walked over to the official countdown clock and took some pictures.


Go Atlantis!!!


See the silver van/bus on the left hand side? That would be the AstroVan taking the crew out to the launch pad.



About 5 minutes prior to launch, my hands got all sweaty and my heart was beating fast. We were all laughing at how incredibly nervous and excited we were. My hands were literally shaking. And then, 31 seconds prior to ignition, I heard "failure" over the loud speaker. The crowd groaned and silence followed. It turns out the arm that has the vent cap (covers the tip-top of the External Tank) was showing data that made it look like it had not rotated away from the Shuttle, so they had to confirm with cameras that it was out of the way of the Shuttle. Talk about hair raising, stomach in throat moments. The launch window is only about 5 minutes long , exceed that time and it would have to be scrubbed and attempted the next day.

Launch Video

The launch control team did a phenomenal job and Atlantis launched only 2 minutes past her official launch time of 11:26am. I was able to see a launch last May, just before sunrise and was amazed by how bright the Shuttle is as she ascends. However, this time I was BLOWN AWAY by how bright she was in broad daylight!!! She had barely cleared the pad when I was overcome with emotion, not believing I was witnessing the last launch of a Space Shuttle. Ever. My hands shook as I held my little point and shoot camera to the side to try and capture the launch in video and tears streamed down my cheeks. It was over too quickly. My friends and I just stared at each other, cheeks wet with tears, trying to wrap our minds around what we had just witnessed. Discovery and Endeavor each put up a fight on their last launches, technical issues causing delays on both launches. Atlantis went out a graceful lady. Accepting of her fate and with a show I will never forget.

There was a low cloud ceiling so we were only able to see her for about 30 seconds, but after Atlantis left our sight, we could see the shadow of her plume projected on the clouds...and hear her!


We were there.


The end of an era. But not the end of the American space program. With the International Space Station, we will maintain an American presence in space until at least 2020.

Shadow Creek Ranch Sprint Triathlon

So, this is the only picture I took of this race. It's of my shirt :)

The day before this race, I tweaked my back...adding air to my bike tires no less. It went something like this: Front tire: pump, pump, pump, pump. Done. Back tire: pump, pump, pu-OH MY GOSH THE RIGHT SIDE OF MY BACK!!!! Yeah, it was hurting to bend at the waist...as in the motion that you use on the bike to lean down to grab the handlebars (and aerobars). So, I stretched, and iced, and popped some muscle relaxers. Rinse and repeat that series throughout the day. The back was feeling better by evening, so I went to sleep thinking, "if I wake up and it feels better, I am doing this race until The Back tells me to stop". And praise the Lord, when I woke up, the back was at about 85% (pretty much normal these days, although, I've been hitting about 90% lately). So I jumped in my car and headed to the race.

My stats:

Age group (30-39): 19/31

Swim: 12:57 (slow, but only 50 sec slower than my pool time, which shows how nice the open water swim was)
T1: 1:55
Bike: 48:08 (16.8mph average)
T2: 1:14 (one of my longer T2 transitions because I forgot to lay out my Endurolyte capsules (salt pills) and had to dig them out of my bag)
Run: 36:04 (11:16/mile pace) - eh, I was just glad my face didn't explode away from my skull. It was so hot.

Total time: 1 hr 40 min.

The Story:
I met my friends Erin V, Rick, and Lisa L in transition, and we walked down to the swim start. This was the first time I was doing a swim where it was a point to point swim (ie, we started the swim in one spot and exited in another spot). What this meant was a glorious straight stretch of swimming with no buoys (and swimmer congestion) to swim around. As we waited for the swim to start, we were "treated" to a surprise shower of the ground sprinklers. Apparently, someone forgot to tell the park to turn them off that morning :). Despite the heat and humidity, 400 triathletes found themselves shivering at the swim start. Good times.

Swim (77 deg, 90% humidity)
The airhorn blasted and off we went, water churning. It was actually one of the less hectic open swim starts I have done, so that helped me get into my pace (my SLOW pace) quickly. I only finished 50 seconds slower than my pool time, so the open water craziness at swim start wasn't too bad (for comparison, my last tri swim time was 3 minutes slower than my pool time). I have so much room to improve in this area.

Bike (81 deg, 82% humidity, heat index, 86 deg)
The bike was pretty decent. However, I hadn't ridden my bike in 3 weeks and hadn't done an actually brick workout (bike then run - I did do two 'pseudo' bricks: after a 45 minute spin class, I ran 2.5 miles) so I was cautious on how much I pushed it on the bike, I didn't want to blow up on the run. I definitely could have pushed more.

Run (86 deg, 72% humidity, heat index, 92 deg)
The theme of the run was "hot, hotter, holy moly it's hot". There was no shade on the concrete trail that we ran on for 3.2 miles. I ran with Gatorade, something I have found key for me to do so I don't overheat (too much :) ) on the run. I also took an Endurolyte capsule. Endurolyte is a brand of salt pills - they are supposed to help you not to overheat. I forgot them on the bike, so I think if I would have taken one on the bike and then on the run, it would have been a bit better. I did have to stop and walk a couple of times, not because my muscles were tired, but because I was seriously afraid I was going to do damage to my skull as the top of my head felt ready to blow off. HOT.

Thoughts:
I did not feel ready going into this race. Due to some other medical issues I had earlier in the month, I hadn't put in the training time I wanted to. However, after the race, my muscles felt great, so that tells me I did have the training. Now, I need to up my training so I can start getting faster. My back did GREAT during the race. It did AWFUL after the race. By the time I drove home, it was starting to tighten and by late afternoon, I could barely walk. I stretched, iced, rested, and eventually popped a muscle relaxer and a Vicadin because it was THAT bad. Thankfully, when I woke up on Monday, it had calmed quite a bit and I could walk without the "granny stoop". My chiropractor got me in at 9am and PTed me up. By the end of the day, things were much better. I've had to use the back pillow all week for additional support, but my run this morning went well (no back issues all day), so I am so pleased with how quickly the Back bounced back. Thank you Lord! But still, I'll take one day at a time. One race at a time. And be thankful for what I CAN do and for what He allows me to do. By the way, this race happened to be one year TO THE DAY from when I went to the ER initially for my back pain. How great is God? He has taught me so much about myself and my walk with Him, my position before Him. I would NOT trade in the past year for what I have learned. And that my friends, can only be typed because of His grace. Thank you God.