A David Moment

It's been a rough past five or six days pain-wise and sleep-wise and I've found myself getting pretty discouraged. My right hand recently broke out with the blister/ulcers that I usually get only when it gets cold outside (one of the aspects of the Raynaud's Syndrome that I have). It made me crinkle my brow, because I wouldn't think that would happen with the new meds in my system - I know I am not supposed to really start seeing results for another couple of months, but I didn't think that I would still be getting disease things - I was hoping everything would just freeze where it is at. And my abdomen pain has been pretty brutal at times and on top of all that, I am having a lot of trouble sleeping - I just can't sleep through the night and wake up and can stay up for hours before falling back asleep. It's been very wearing.

I found myself at caregroup last night not wanting to ask for prayer because I am so TIRED of praying for my health and tired of disappointing people when they ask me expectantly "so, are you feeling better?" and I have to say no. I know that probably sounds a little crazy, but I'm just being honest here. My sweet group had great encouraging things to say and did pray for me when I finally admitted that I didn't want to ask for prayer...and while I appreciated their prayers and concern, I still came home hurting, tired, and discouraged.

I've been studying the book of Hebrews, but I wasn't feeling it this morning. I journaled a bit and asked God to remind me that I do find joy in what He is doing through all of this and that I want to share that joy with others. I was feeling so weary. So I looked up verses on "weary".

I read Hebrews 12:3 but it wasn't what I was looking for...I went on to the next verse that had "weary" in it, Psalm 69:3- "I am weary with my crying out; my throat is parched. My eyes grow dim with waiting for my God." Um. WOW. What's this? Did I write this? Nope, David did...I flipped the page and started at the beginning of the psalm. Here's how God used this psalm to mightily encourage me today:

So you saw verse 3 (crying out, eyes growing dim)...and then nine verses later, David writes this:
"But as for me, my prayer is to you, O Lord. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness" (Psalm 69:12). 

Oh Lord, YES! You know that I know this is all part of Your plan and that it is for my good and your Glory. But please Lord, in your timing, end this season for me.

And then David writes:

"I am afflicted and in pain; let your salvation, O God, set me on high" (Psalm 69:29)


Oh so true, and yes, Lord, I would really like for this disease to settle, to go away completely.

"I will praise the name of God with a song; I will magnify him with thanksgiving. This will please the Lord more than an ox or a bull with horns and hoofs. When the humble see it they will be glad; you who seek God let your hearts revive. For the Lord hears the needy and does not despise his own people who are prisoners" (Psalm 69: 30-33)


Now, the study portion of my bible says that this is what David (who is writing this psalm with the perspective that we all should have in trials) will do if he is delivered from his trial. I agree with that, yet, I want to praise the Lord even if this trial doesn't end, because He never ceases to amaze me with how He blesses me and gives me grace - true, it may not be according to my plan, but it is always so much sweeter and greater than what I have planned. And I hope when I share how He has blessed me and given me grace, that it encourages those around me, that they will see Him working, and not me. And this is EXACTLY what David is saying. Whoa. Big whoa.

And finally, David writes:

"For God will save Zion and build up the cities of Judah, and people shall dwell there and possess it; the offspring of his servants shall inherit it and those who love his name shall dwell in it." (Psalm 69:34-36)


Ah yes Lord, my hope is not in this world, but in Heaven. One day, I WILL have perfect health. That day when I am with you for all eternity. What amazing hope!

I cannot tell you how encouraged I felt after going through this psalm and writing down those verses. My Father cares for me, He encourages me when I am discouraged and points me back to Him.

And that, was my David moment. ::grin::

Cupcake fail

They may look like yummy chocolate cupcakes....

But they weren't. Oh disappointed tastebuds. The texture was really off and they were super dry. They definitely tasted gluten free. Not sure if I am up for tweaking the recipe with some applesauce to try and  add more moisture because they were just that OFF (seriously, I made myself eat a few and then threw the rest away) that I am not sure if it's redeemable. Oh well...good thing there are other recipes out there...or I'll just use the ever handy and tasty Pamela's Products Chocolate cake mix :).

Ingredients...just in case you were wondering...

Hopefully helpful

At the end of June I had the opportunity to attend The Gospel Coalition Women's Conference in Orlando. It was an amazing two and a half days and I plan to blog a summary of some of the messages (there were over 15(!!!) so I don't know if I will cover them all).

One of the breakout sessions was on grief. I attended the session with my friend who has recently lost her children due to premature birth. I was there mainly to support her, but I ended up learning so much and wishing that I had known some of this information before walking with her during her grief. The talk was aimed at the grieving woman, but it gave me such insight into the grieving process and I found I took away a lot of how to walk (or not to walk!) with someone during her grief. I know many of you out there who read this blog are dealing with grief or know someone who is processing the death of a loved one and wish you knew what to say or how to help. I'm going to share the notes I took during the session and my own thoughts on each item and I hope they are helpful to you.

The session was lead by Nancy Guthrie. Nancy has experienced the death of two of her children before they were age one. Hearing her share what she went through, what God taught her, and her desire to share and empathize with women who now share her situation, was sad, touching, encouraging, and beautiful.

The title of her talk was "Seven things it's going to take to get through this"

1) It's going to take some time to be sad

Nancy's nuggets: "Faith doesn't make loss hurt less" and "joy and sadness can coexist"

My thoughts: I so appreciated this statement. I think as Christians, we can put so much pressure on ourselves to "be happy because you belong to the Lord and He loves you" and we can feel as though if we are sinning if we feel sad. God created emotion and sadness is one of those emotions. Jesus wept at the death of Lazarus. It's okay to feel sad. When counseling or talking with someone who is grieving, you don't have to feel like you need to cheer them up. Sometimes, they just need someone to sit with them and let them be sad. Pray for them, hug them, love them, and keep a caring eye on them, but let them cry and be sad.

2) It's going to take some time searching the Scriptures

Nancy's nuggets: "We only find comfort in the Bible when we approach it from a big picture perspective". "While grieving, we tend to shout "I am so MAD at God!", but why don't we say, "I am so MAD at sin?"

My thoughts: We all have our "pet" Bible verses that we turn to to make us feel better and remind us that God is there - this is a good thing and I am in no way discouraging this practice. But in tough situations, like dealing with grief, sometimes, those verses just don't seem to help. When you read "trust in the Lord with all your heart and lean not on your own understanding" (Prov 3:5) while you are bawling your eyes out...to me, the next logical thought could potentially be "oh Lord, but how do I trust when I hurt so much?" Nancy is encouraging the griever to look at Scripture from a 10,000 foot view. Remember what happened in the garden - Adam and Eve sinned. It is because of sin that the world is how it is today. "God is not going to leave this world this broken where there is this much suffering." In fact, God sent His son Jesus to die on a cross for our sins and save us and give us eternal life in Him. When nothing else brings comfort, step back and remember the cross. God is faithful. He is there.

3) It's going to take some forgiving...and more forgiving

Nancy shared how she kept track of who asked about her daughter (and then her son) after they died. And who didn't. She noticed. It is so awkward and difficult to know what to say to someone who is in a horrible situation, such as the loss of a spouse or child. You don't want to upset them any more than they are already upset, you don't want to say the wrong thing...so oftentimes, we say nothing at all. And to the grieving person, that is like rubbing salt in the wound. It's like we are saying "the person you lost isn't important enough to ask about, to talk about"...now of course, that is NOT our intent at all, but to the grieving person who's emotions are on overload, that's exactly how it can come across. So my advice, ask the grieving person right off the bat if they mind you talking about or asking about their loved one, and if they give you the green light, and then ask questions. If they aren't ready to talk yet, let them know that you are waiting for them to tell you, that way they know you care and are ready to listen. I have been amazed to see the happiness, sometimes revealed through tears, of a friend sharing the few memories they have of a child or a spouse. Ask. And as the griever, please forgive us who just don't know what to do, we want to love you, and we must turn to God for Him to show us how. Be patient with us, we do care. Oh, and don't say "I can't imagine what you are going through" - Imagine it. Because that helps you to empathize better. Put yourself in that persons shoes, as painful as it will be. I read this on Noel Piper's blog (she lost her daughter at birth) and I've found it immensely helpful over the past months. Say "I can only imagine what you are going through."

4)It's going to require hard choices

Nancy's nuggets: "Grief keeps you feeling close to the one you have lost. The idea of losing that closeness is scary. So even though you want to heal, you don't". "You have to give grief permission to release its hold. "You don't move on, you move forward." "Make the choice to not be the woman defined by her grief but by her connection to Jesus Christ. "Your love for the person you lost is not defined by ongoing misery"

My thoughts: I don't have much to add here, because this was a valuable insight to me. I had never thought about the comfort grief can bring and I hope it makes me more sensitive. Also, one thing that I've noticed is that a griever just wants to feel "normal" again. And they need to realize that they will never feel their old "normal" again, they have to find a new "normal". I think this aligns with Nancy's "you don't move on, you move forward."

5)It's going to require some telling yourself the truth

Nancy's nuggets: "What do you do with the voices and thoughts in your head? Capture them and confront them - ask, 'is that true?' And if it isn't, start arguing with it. Confront your thoughts"

My thoughts: This applies to grief and other situations we can find ourselves in - our imaginations start running away with us and Satan knows exactly what to whisper to us to make ourselves start doubting that God loves us. This was a Scripture I texted to my friend when she was in the hospital and one that I find myself using almost daily: "We destroy thoughts and every lofty opinion against the knowledge of God, and take every thought captive to obey Christ"  - 2 Corinthians 10:5. Satan's whispers of doubt can seem loud, but God's voice is always, ALWAYS louder.

6) It's going to take some reaching out to someone else

Again, this is a point that applies to grief and other situations, such as chronic illness. We can become so wrapped up in our own hurt and grief, that we forget others. So at some point, we need to start reaching out to others, serve someone. Maybe there is another woman who has just lost a child and you know exactly how she feels - go talk to her, bring her family a meal.  Nancy's nugget: "Your pain makes you more sensitive to someone else's pain"

7) It's going to take God Himself filling in the empty places in yourself

Nancy's nuggets: "My grace is sufficient for you..." 2 Corinthians 12:7-10. God does not see your emptiness as a problem, He sees it as an opportunity. God does his best work with empty. He fills us with Himself".

My thoughts: Nothing in this world can fill that emptiness that the griever feels - the empty side of the bed, the arms that long to hold the child that is no longer there. God can. God is the ultimate healer. I think that when we hear that statement "God is the ultimate healer" we think that means God can fix everything and make it all better. Yes, God can fix it and He can make it better, but that doesn't mean it's going to change what you went through - it just means that He is going to grow you closer to Him and change your heart to see Him better - to see that He is being glorified through what you are going through, and there are a thousand things going on in the background that you can't see, but He can. So griever, turn to Him, trust in Him, cling to Him when you can't see where to step next. He is faithful.

So there you go. My thoughts are by no means perfect or the end all/be all. I am still learning and growing. I would love to hear what you all have learned by walking through grief or walking with a grieving friend. And I am so thankful for people like Nancy Guthrie, who allow themselves to be used by God to minister to and encourage others. 

Cabinet tweak

The new white ceramic knobs that I put on the cabinet just weren't cutting it - I'd look at them and think "nah, that's just not it". I had wanted some mercury glass knobs, but the square ones that were available at Hobby Lobby were all mismatched sizes. Today, while out shopping, Anthropologie delivered with these awesome mercury glass knobs. I love the difference and they are JUST what I had pictured being on the cabinet...you'd think I would have learned by now to not just settle...apparently, I'm still learning :)

Before and After...

Cabinet complete!!!

I needed a small cabinet in my dining room to house the teasets and teapots I've collected during my travels (and yes, I actually use these!). After much searching on craigslist, this beauty popped up and it was a great deal.

Antique cabinet - sometimes it's a hard decision to paint over such beautiful wood...but...paint can be removed - so bring on the paint!

I sanded and primer-ed it and then found this blue that just makes me smile every time I look at it. It's a really happy blue :)

I used a small round gladware container and dipped it in one of the sample jars of gray paint I have laying around and just stamped it on the back of the cabinet to add a little texture.

I added new knobs and voila! A cabinet just right for holding the teasets and teapots. Here's how it looks in the dining room. I'm really liking the addition and it's a perfect place to display the melted crayon artwork.

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 meds...so 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. 

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 now...so 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 affects...at 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.