Saturday, June 30, 2012

Bring on the Benlysta!

I love how perfect God's timing is. This past week was challenging from a pain-perspective. It started on Sunday - I don't know if I took the pain meds too late or what, but they barely made a dent in helping...and I took the full 4 doses over the day. And then the serositis came back...

I don't think I ever blogged an update about this, but the stomach/abdominal pain that I was experiencing throughout most of the spring (and had all those scans done) turned out to be serositis, which is the inflammation of the lining of the heart, lungs, and/or abdomen...and a symptom of lupus. Mine is currently affecting the lining of my abdomen although I have had it affect my lungs (that's called pleurisy and I had it several times in college, so even back then, things were starting to point more to lupus) It's pretty painful and it makes me feel sick to my stomach, which takes away my appetite, and well, the whole vicious weight cycle thing begins. Thankfully, the serositis has subsided for the most part over the past couple of months and the steroids I am on helped me to gain several pounds back. But on Sunday, my stomach started hurting again and it's been that way all week.

On Wednesday, I called the insurance company and they had approved the Benlysta! I called my doctor and they scheduled me for my first infusion on Thursday! I was so excited I couldn't talk to anyone because I knew I would burst into tears from thankfulness - here I was, getting myself ready to handle the serositis again and the nagging suspicion I have that the current dose of pain med isn't enough (my body tends to build a tolerance to medicines very quickly) and God moved all the paperwork through and got me an appointment immediately. Such mercy!

So the way the infusions work is that I go in every other week for six weeks and get a infusion. An infusion means the medicine is administered via IV. After the first six weeks, I get the infusions once a month.

On Thursday, my friend Lisa picked me up and drove me to the doctors (they give you benedryl in case you have an allergic reaction and the benedryl makes you really woozy and unable to drive. Also, they want someone there in case you have a freak response to the drug).

Super excited to have this needle stuck in my arm :)

The infusion took about two hours since for the first one, they administer the Benlysta slowly, in case you have a reaction to it (from now on, it will take about an hour). I was a bit drowsy from the benedryl and had to force myself to focus so I could chat with Lisa, but I had no problems during the infusion. The nurse told me I was the 9th patient in their office to receive Benlysta and all the other patients reported pretty severe flu-like symptoms for 3-5 days after the infusion - severe fatigue, body aches, fever, and nausea. This matched with all the research I had done.

I was feeling okay after the infusion and just took it easy at home. Around 6pm, it suddenly felt like my limbs weighed a thousand pounds and I could barely keep my eyes open. I was so incredibly tired and was shocked by how fast the fatigue came on! I ended up going to bed about a half hour later and woke up several times during the night afraid I was going to vomit, but thankfully, I didn't! I felt pretty decent the next morning (my usual morning "normal", which for me is mild joint pain and mild nausea). I went to work and did just fine. I started getting tired in the afternoon and by evening, was pretty zapped. I woke up this morning after a good night's sleep feeling like I had just pulled an all-nighter and have been dragging all day (despite a healthy caffeine intake :) ), so I can say I am definitely experiencing the Benlysta side effects, but very mildly so - I am so incredibly thankful for that!

So the forward plan is continue with the infusions. After about 3- 4 months, if I start responding to the Benlysta (it can take a couple of months to notice if it is working), we can start weaning me off of my other for the next few months, I'm going to kinda feel like Chemical Woman - lots of chemicals running through my veins :). I am really hoping that this new drug works for me - it would be amazing to feel like I did three or four years ago when my disease was pretty much in remission. I can barely remember what it felt like to not hurt constantly and to have energy. Such a good reminder for me to not take good health for granted and to do what I can when I feel well. My disease started to destabilize two years ago and it's been a hard and growing journey, one I wouldn't trade because of all that God has taught me.  I know this new med may not solve everything, but I feel like a new chapter has started. 

Sunday, June 17, 2012

Training on the horizon?

It's probably too early for this post, but I thought it would be fun to post about something I haven't in a long time.

With the new pain meds, I find myself with more of my usual energy...I didn't realize how tired I was from hurting so much. The pain med takes the edge off- I still hurt, but I am not as aware of it (praise God!). And since the inflammation I experience is not damaging my joints (thankfully!), it's just a matter of dealing with pain, and my doctors have no restrictions on what I physically do (they know I pay close attention to my limits), I decided to go for a run on Monday!

It was nice to pop out of bed at 4:45am ( I know, I am crazy right? :) ), put on my running shoes, and head out. I just took a regular watch with me, not my Garmin, because I didn't want to pay attention to my pace. I just wanted to run. I ran 1.4 miles and I felt good after it. And since I timed my run, it turned out I ran at a 10:00 even pace...not bad for not running since January. My right IT band still caused some problems, so there is gait analysis and some PT in my future when I start increasing mileage.

Then, I went on a bike ride on Saturday. My friend Lisa and I did an easy 25 miles. I did feel this workout...we took a Starbucks break towards the end, which I really needed. Right after the ride, I felt zapped of energy and my left ankle and hips weren't happy, but some lunch and three doses of the pain meds over the day made it tolerable (I'm allowed up to 4 doses a day, so I didn't max out, but I usually only take 2 per day).

And then, I went swimming today. I started a membership at a new pool in hopes of conquering the Big Bad Swim...and figured this would be one exercise that would be more forgiving on the joint inflammation.

Holy-out-of-shape-Melissa Batman.

 I used to be able to swim over a mile...I was gasping for breath and couldn't feel my arms after just 100 yards of freestyle followed by 100 yds of breaststroke. I made myself do 100 yds of pulls without paddles, 50 yds of sidekick drills, another 100 yds of free and 50yds of breaststroke...yup, 500 yds total (hey, engineer here, I like even numbers :) ). I almost landed on my face as I pulled myself out of the pool because my arms were completely DEAD...I seriously had spaghetti limbs and a high heart rate...but I recovered decently (might be the ice cream I ate afterwards ;-) ). I wasn't upset over this, I mean, I honestly can't remember the last time I swam, so I wasn't expecting a Phelps-like performance today. The hips and shoulder joints did hurt a bit afterwards, but seem to have settled probably just doing 300yds for a while will be a good distance for me.

So what did I learn? That I'm definitely not ready for full blown training- exactly what I expected and I am content with that. I just wanted to see where I was physically. I can do small amounts - the run distance was good, the bike was a bit long (or I need to take more breaks), and the swim distance will need to be shortened until fitness improves, but I can start getting some cardio and muscle back, which will be nice. Obviously,  I don't want to rely on the pain meds to "bandaid" everything (they are non-habit forming, just in case anyone was concerned (I was, that was the first question I asked!), and hopefully, and Lord willing, once the insurance approves the new meds, they won't be necessary. But of course, baby steps here - I don't want to stress my body out any more than it already is - I am shooting for the rehabilitating affects of exercise, not the training least for now :).

So that's my fun "training" post - I hope you weren't anticipating trumpets and fireworks, but I'm glad I was able to do what I did this week. Such a good reminder to be thankful for every step forward, and for learning my limits and my dependency on Him.

Saturday, June 9, 2012

Eruption at Volcanoes National Park

Did that get your attention (were you thinking - lava, fire, Melissa had to run for her life, what!?) :) ? No, it wasn't a volcanic eruption, but rather an eruption of memories during the hike my friend Erin and I did at Volcanoes National Park.

First off, I was so thrilled to go to this park. I've been fascinated with volcanoes since I was about 10 years old when I watched a documentary on the eruption of Vesuvius and the destruction of Pompeii. I've read books on the Mount St. Helen's eruption and Krakatoa. I think I seriously could consider being a volcanologist as a second career choice - that's how interesting I find volcanoes.

Anyhow, Erin and I started our trek by doing a 4 mile hike across one of the inactive craters. I enjoy hiking and was so thankful for the new pain medication that was tempering my joint pain sufficiently to where I could do this hike (it was a very low key hike, no crazy steep grades or climbing or anything like that - three doses of the pain meds throughout the day kept me fairly comfy).

When we stopped to eat lunch, I pulled out the peanut butter and jelly sandwich I had made, bit into it, and my eyes flooded with tears. All at once, I remembered my grandparents and how they taught me about hiking. (Most of you will remember that I lost my Grandpa and Grandma last year suddenly, within a week of each other, and I was with my Grandma when she died. And that I had a great relationship with them. I'm still working through the emotions of how much I miss writing to them, getting their letters, and catching up over coffee when I visit Arizona).

My Grandma knew a TON about Arizona plants and wildlife and because she also took several classes in archaeology and participated in digs, she knew a lot about history, geology, etc. So hikes were actually teaching sessions for us grandkids. We learned the names of plants, types of rocks, what plants you could eat, hiking etiquette, the dos and don'ts of going to the bathroom on the trails, drink lots of water and eat oranges, etc. And we always had peanut butter and jelly sandwiches for lunch and drank water out of repurposed syrup bottles (gotta love the Depression generation, they reuse EVERYTHING!). So when I bit into that sandwich, an image of a syrup water bottle popped up...and then every single memory I have of them on all the hikes we took as kids and into my adulthood literally flooded my mind and I couldn't see the crater in front of me anymore, only them. And I sat there, sniffling into my sandwich and trying not to burst out sobbing as I was again struck by how much I miss them. 

For the remainder of the hike, I found myself praying and thanking God for the relationship I had with my grandparents, for what they taught me, and actually glad that I missed them - because that means I loved them, and they loved me, and we had a relationship - and I am so very thankful to be able say that.

Volcanoes National Park was my favorite part about my vacation. God used it to heal me a bit more over the loss of my grandparents - what an unexpected blessing!

So thank you Lord, for the opportunity to remember my grandparents in such a good way on my trip and to allow my heart to heal a bit more.

Monday, June 4, 2012


Heart of Iron by Kyle Garlett

Excellent book on Kyle's battle against Hodgkin's lymphoma. The treatments for his cancer damaged his heart and required him to have a heart transplant...and then he decided to do an Ironman. I bought this book awhile ago and when I got to the account of his Ironman race attempts, I actually shouted a bit because I realized I had watched his story unfold during the Ironman coverage over the past two years! It was so neat to read all that he went through and to see his perspective on suffering and battling. I got goosebumps a couple of times when reading his description and examples of the beauty that is found in suffering. A good inspirational read.

This Momentary Marriage by John Piper

My friends gave this as their "party favor" at their wedding. Everyone (or family) in attendance received a copy. This book is amazing. A-mazing. It's about what God intended marriage to be and how couples should walk that out. I highly recommend singles to read this as well because it takes the "rose-colored glasses" romanticized perspective that we can all have about marriage and redefines it in a beautiful, challenging,  and godly way. There are some very encouraging chapters about the single season as well. Highly recommend for married couples and singles.

The Divergent Trilogy by Veronica Roth

 Pretty sure I like this trilogy (or the first two books of it, book three isn't due out until Fall '13) better than The Hunger Games. Crazy right? There are some parallels one could draw between the two trilogies - Brave New World-esque/Dystopian society themes are there - but Roth uses factions instead of districts. There are five factions based on virtues - a faction for bravery, for selflessness, for friendliness, for knowledge, and for honesty. One is born into a faction but at age 16, a test is administered to determine one's propensity for their current faction or another, and they must chose between the two factions - stay with one's family, or leave them forever. Faction before blood. Great writing - the book moves fast. It's a use a friend's word, "saltier" than the Hunger Games books, so more appropriate, in my mind, for older readers. I'm looking forward to the 3rd book! Good summer reading.

The Pursuit of God by A.W. Tozer

Yay for free Kindle downloads. This book blew my mind. A.W . Tozer only had a 6th grade education and this book was written in the 1940s, yet all of his examples make it seem like it was written for modern day. Convicting, encouraging, applicable - I could go on and on. Each chapter concludes with Tozer's own prayers, which are beautiful and sincere, and echoed my heart in many chapters. A great tool for regaining focus on what matters, God. Highly recommend.

Sunday, June 3, 2012

Forward plan

The day before I left for vacation, I met with the NRD (New Rheumo Doc) and talked the results of my labs. He confirmed that I most definitely have the Sjogren's and Lupus antibodies (I had told him that, but didn't have the latest numbers in front of me). Normal ( i.e not having Sjogren's or Lupus) is less than 1...I have a whopping level 8. He decided that because of such a reading, the lip biopsy wasn't going to be needed. Yay no puffy lips (I really wasn't that concerned, in fact, I was kinda looking forward to posting a goofy picture of me with puffy lips...oh well... :) ).

Then we started talking the forward plan. He mentioned the Benlysta meds and I must have made a face because he chuckled and said "oh that's right, you're the crazy woman who doesn't want to take Benlysta". Yup, he really did call me a crazy woman. :)

After some talking on my part telling him that I wasn't absolutely opposed to it, just the material that I had read was scary, he gave me some additional information on expected side affects, results, etc. And I discovered that I can't get approved for the other med that was on our earlier table of options, since my antibodies are Sjogren's/Lupus and the other med is only approved for R.A. (rheumatoid arthritis). Since I meet the required number of factors/symptoms to be diagnosed lupus, NRD officially coded me as SLE (systemic lupus erythematosus) with secondary Sjogren's. ::gulp::. And I agreed to give Benelysta a try. ::bigger gulp::

I spoke with my Current Rheumo Doc (CRD) while I was on vacation and they confirmed that they could administer Benlysta in their offices (Benlysta is given via IV). They are currently working the insurance stuff out, and as long as all of that clears, my first infusion will be on June 13th!

In addition to that forward plan, NRD had me try a new pain med and it works well!!! The pain isn't gone, but it is dulled sufficiently so that I feel like my brain is getting a break from dealing with the pain. It is amazing how much fighting pain exhausts you. And cheer-worthy aspect about this med is that it is NOT a narcotic, which means I can take it during the day (if needed) and not be all loopy/dizzy/non-functioning. Huge huge huge praise on finding something that is working until the new med can be administered and kick in.

So that's the forward plan. We'll see how it goes. Even if it doesn't pan out the way I hope it does, I know that God is still working through all of this and all that matters is that all of this is part of HIS plan.

Ligonier Conference recap

Ack - this is major blog catch-up.

At the beginning of May I went to the Ligonier Regional Conference here in Houston. The topic was "One Passion" and through several sermons, the speakers, Sinclair Ferguson and Steve Lawson, spoke about having one passion for God and how that looks in different areas: worship,  the Bible, work, and witnessing. The end of the conference concluded with an question/answer session with R.C. Sproul who video-teleconed in from Florida. Excellent teaching!!! It was the first time I had heard Steve Lawson speak and I enjoyed how he taught. So thankful for opportunities like this to spend a day and a half soaking up the wisdom these men have gained from their years of studying God's word.

Here were the highlights for me from each sermon:

One Passion in Worship

Hebrews 10:19-25

This text was written to new Christians who were used to an Old Testament form of worship (with robes, ceremonies, specific rules that had to be followed, etc), to show them and encourage them that their worship was now a first-hand experience, because of the presence of Jesus Christ. It is the presence of Jesus Christ that should drive a person to worship. Before Christ, worship was second hand, done through the priests. Now, "and since we have a great high priest" - that is, Jesus Christ, our worship is firsthand, and perfected by Christ, since Christ is in us.

"Singing praises to God is very often where we learn to think about God" - S.F.

One Passion in the Word

Psalm 119:161-168

The word "enthusiasm" - is Greek, en-theos - In God... wow, word-geek (me :) ) mind-blown. Those of us in God should be marked by our enthusiasm for God's word.

Marks of Spiritual Passion:
- Reverential awe - having a healthy, holy fear of the Lord - to take His word seriously
- Rejoicing - As believers, the joy that we have is the same joy that is in/was in Jesus Christ. The word of God should thrill our soul.
- Radiant love - It's a very good sign in your spiritual life if you can say you LOVE God's word
- Passion for God's word- circumstances should not change your praise of God. The deeper you go into the word, the more and higher you will praise God
- Real peace - our hearts are made to respond to God's word. Peace is not a destination, it is a by-product - only believers experience peace.

One Passion in Work

Titus 1:11-14

We need to be zealous in our works, you cannot compartmentalize good works, thus, whatever we do, we need to do it with zeal and passion, wholeheartedly. We were saved from lawless deeds in order to perform good deeds. There will always be consistency between the heart and deeds (Titus 1:16). As long as we are alive, there is work that we are supposed to be doing; when that work is complete, God will call us home. Good deeds/works are everything that God calls us to do within His will. Questions to ask yourself: are you born again? If so, are you doing good works? If so, are you doing them with zeal?

One Passion in Witnessing

Romans 1:14-17

If you have a passion for God, then you will have a passion for the gospel and then you will have a passion for sharing the gospel.

We are under obligation to give what we have been given (share the news of the gospel), we should be eager to share the gospel, and we should not be ashamed to share the gospel.