No Exchanges or Returns

Oh how I prayed there would be something to update you all with. And there is, it's just not what I anticipated. His answers sometimes differ from the ones we expect, from the ones we pray for :-).

Round 5 of chemo for my lupus is complete and we're two weeks away from the 6th, and expected final, round. Since we upped the dose, pretty much the whole week after is rough from a fatigue perspective. As long as I stay on top of my nausea meds, it's not too bad. But the fatigue and over sick feeling - wowee. I sleep pretty much all day for the first couple of days after, and then my naps gradually get shorter. And at about a week out from the dose, I feel like I usually do.

Complications this round included my insurance company balking for the first time since the new year (it's a praise that they haven't questioned the chemo treatments). Unfortunately, it's over my main pain med. I take an extended release form of it and then a regular release form of it for breakthrough pain. It's the extended release form that they are questioning (and I understand, this is a continuing treatment for me and they are seeing for the first time - I switched health insurance in January). So for the last two and a half weeks, I've been trying to time the regular release pain med to mimic an extended release plus handle break-through pain...it worked initially, but as the level of the meds wore off in my system, my pain levels have increased and stay at a pretty uncomfortable level most of the day. This means more days in bed and less days trying to have outings or visit with people, or do things around the house. So that's been dreary side of the past few weeks.

A huge praise is that I was able to get into a second opinion rheumatologist (still seeing the bigwig one in March) and she recommended a neurologist look into my case and gave me a name. I was able to get in to see him the day after I called! That NEVER happens. And, he is AWESOME. He spent time listening to the complicated history and reviewing the almost 2-inch thick folder (um, it's a Batman folder :-) ) of medical reports from each of the hospitals. I had another series of brain/spine MRIs that came back normal. The next step is for me to have another lumbar puncture (LP)  (also known as a spinal tap). This will be my 6th (!!!) since August. He needs to see what's going on in the fluid. Should be happening next week. 

I am now in a single digit dose of the steroids and should start to see (over the coming months) a loss of the water and steroid weight I've gained. I'm excited for that because I very much want to be comfortable in my own skin again. Chemo and steroids do quite the doozy on your body, although I'm thankful for the steroids because we are seeing that they have been helping with the head inflammation: my head keeps hurting worse the lower we go in the steroids..;so that's going to be an interesting discussion once I get to my steady state steroid dose.

That's my update - not much change painwise, except in what I consider the wrong direction. Some positive change in endurance and stamina (I was able to attend a friend's birthday party with a fairly large group of people in a busy restaurant - the ear plugs definitely helped!). What is every day normal for someone - grocery shopping, happy hour with the coworkers, trying to find a pair of jeans that fits, is a milestone for me and something we celebrate. It hurts to do these things, it requires detailed spoon balancing, but I am able (He enables me) to see past the pain and move forward, accepting the pain as part of the process, even though I don't like it. 

People comment that my faith is strong. I assure you, it's not. Instead, I offer to you that my God is strong. He is the one who enables me to get through each day, not just surviving, but most of the time with forward motion, with joy. Some days are survival days and that's okay. People comment that they couldn't imagine going through this, or handling what we are walking through. And they are right. They couldn't. Because they haven't been asked to walk what we're walking.

God gives us the grace we need for what He brings about in our lives - no more, no less. 

What's grace? Merriam Webster defines it as "unmerited divine assistance given to humans to promote growth (as in character growth) or the church-y word "sanctification, a special favor, an act or instance of kindness, courtesy, or clemency. I recently read something that pricked my heart. From "The Scars that Have Shaped Me," Vaneetha Rendall states that there is deliverance grace and sustaining grace. 

We (or at least me) pray for deliverance grace - to be healed, to be vindicated, to redeem that which is broken or unsettled - the wayward child, the broken relationship, for the tumor to shrink. We want it to be fixed and so we pray, just as He tells us to. 

And then there is sustaining grace - that energy to crawl out of bed and face another day of head and neck pain, or to face a grumpy teenager who won't talk to you, or a spouse who's giving the cold shoulder, or that boss that micromanages everything. It's the stiff upper lip/pull yourself up by your bootstraps gutsyness we're able to conjure when all we want to do is crumble, the deep breath we take when it feels that all the air has left the room, the ability to swallow one more med, get poked with one more needle, joke one more time with the nurse, or doctor, or receptionist. This is sustaining grace. He provides us so generously and abundantly the ability to LIVE: to walk in this world and process the hurt and pain, to move forward and encourage others in their hurting, to not be okay with our circumstances but still have the ability to love and laugh and choose joy. He is amazingly good to sustain us. To sustain me.

And I shun it. I put out my hand to return what I've been given and say, um, no. I want deliverance grace, I want this to go away. Let's see a miracle happen. Ready? GO! And He patiently responds with sustaining grace in the form of an email or text message of His Word, reminding me of His faithfulness, His goodness, His power. I stamp my foot and stick out my hand, greedy to thrust back this sustaining grace in return for deliverance grace. 

There are no exchanges or returns on His grace.

He gives the perfect amount, at the perfect time. Grace that, if we believe in Him, will bring us good and Him glory (Rom 8:28).

It's not that He doesn't answer, it's that His answer is different than what I expected, than what I prayed for. It doesn't mean that it's a poor offering from Him, that He's giving me the short end of the stick, the last dredges from the bowl. He is giving me His best - whether that be deliverance grace or sustaining grace. (Matt 7:11)

Oh Lord, for the heart and spirit to sing your praises even when the answer or direction of things doesn't match my expectations. To be able to see your sustaining grace as the immense blessing that it is. To again see that I don't walk this path alone, that you are there, sustaining me, giving me what I need each step of the way. May my definition of "good" match Your definition. May my heart accept the "Final Sale" of the grace, in whatever form, You give to me. And may I rejoice in that grace.

Out of Order

Where to begin?

I am about nine days out from round 4 of the chemo treatments I'm getting for my lupus and it's definitely been the roughest post-chemo so far. Lots of fatigue and that feeling of being sick (fancy medical word for it is "malaise.") I am having to rest and sleep more and my head pain is more present. My biggest complaint? I am retaining a TON of water - so much so that I went in to see my normal doctor to see if she could help. Because of the medications I am on, it's actually riskier (from a dehydration perspective) to put me on a water-retention reducing med (called a "diuretic) than to just let me keep getting poofy until we've completely tapered off the steroids. So I've been doing my own water shed regime of drinking dandelion tea and massive amounts of water. It helps a little bit, my eyes don't get as mushed by my cheeks in the evening, but it hurts to move/breathe and walk and I just keep getting puffier.

I have two second opinion appointments scheduled - one for this Friday and one for March. The one in March is with the rheumotologist I've seen before and who helped us confirm my lupus treatment plan back in 2012 when this all started (sort of). Prayers for wisdom and insight from these docs and for us to be able to accept what seems to be the general answer of "we just have to wait and see once you're off the steroids" would be greatly appreciated.

It seems about every other day I breakdown - overwhelmed with the uncomfortableness, a stab of anxiety of having to wait this out while we taper the steroids and not having the strength to see it through, the lies of the lack of thriving and not contributing constantly trying to win over the Truth that I know to be true.

Such bone deep weariness. I have never experienced weariness like I am now. My body is literally getting too heavy for my joints. My joints are weary, my heart is weary, my mind is weary. I pray for mercy, for this all to end, for a new season to start. Recently, my prayers were pretty whiny as I told God I was done with all this and I absolutely needed to know, demanded to know, when it was going to end.

Not even kidding, the phrase that boomed loudly inside my head was "My ways are not your ways."

I think I actually chuckled out loud. And then googled the reference. Isaiah 55.

I started reading Isaiah 55. I found the verse that had lead me on my search:

"For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord." (vs 8).

Well, that's encouraging, I was tempted to mutter cynically. The next verses? BUT GOD.

"For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts"..."so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it." 

Our world likes a guarantee with experiences, products, agreements. We (I) ask "are you sure? Where is that documented? Where is the contract?"

Shall accomplish. Shall succeed. This is more than buying a new car and being guaranteed the lowest interest rate. This is the Lord God saying that He is going to use whatever He brings about for His purposes. And He will succeed.

And Isaiah 55? It starts out with a series of entreaties to the reader to "come" to the Lord, to listen diligently, to incline our ears, to hear, to seek Him. And then He tells us that He has a plan and that's it is guaranteed to succeed.

I'm doing things out of order. I am demanding a plan before seeing who the Planner is. I need to seek Him first, to listen, to be still. To hear Him. To grow in my trust and knowledge and love of Him. Because then, then by His grace, my heart shall be more aligned with His, my thoughts and my ways reflecting His, instead of my own nearsighted, but very real to me (and potentially not helpful), desires. And guess what happens then?

"For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap theirs hands.

Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord, an everlasting sign that shall not be cut off" (vs 12-13).

HOPE.

There is bright hope for tomorrow in coming to the Lord, in laying down our plan and seeking Him first before I throw my hands in the air and stomp my feet in frustration. He may not reveal His entire plan, but He will have built the trust in my heart to follow Him through it. And He promises joy and peace in the doing so.

Oh Lord for the grace to take a deep breath and look to You before I look to myself.

Ebenezer (Update)

I've been struggling to write because I have been surrounded over the past month with so many amazing articles, blogposts, sermons, emails, etc. from other people who are going through trials that I am afraid I may accidentally copy their words here. What that says to me is this: My God is consistent and His truths stand. From literally across the globe I have seen sentences written out that word for word match sentences I have had in my blogposts - both from this current trial and from others. It's been encouraging and also overwhelming at times, to see how much He cares for me and how He is working in the lives of others.

As for Ebenezer...not the Scrooge one (although we did watch both Mickey's Christmas Carol and The Muppets Christmas Carol in the last week, so my mind may have been influenced slightly :-). The Ebenezer I am talking about is the one that's mentioned in the Old Testament (1 Samuel 7:12). Samuel uses a stone (referred to as 'Ebenezer') to mark a spot to remember that the Lord helped them.

Jim and I have talked about how very much we don't want to forget all that God has been doing during this time - all the time he has used our village to encourage and help us, the times we have seen His hand move to bless us and to lead us in the direction that He wants us to go. We're going to make a list of Ebenezers. And the most recent one is what I want to tell you about.

We are still waiting. The third chemo treatment was a bit of a dud. I didn't notice any changes in my symptoms unfortunately. We will be increasing the dosage of the chemo drug during round 4. The good news is we are continuing to decrease my steroid dose. This is important for many reasons 1) steroids aren't good for you long term 2) the steroids are currently acting as both a pain med and anti-inflammatory. We want to see how I am doing on just the other pain meds so we can start tweaking those - you just can't change too many variables at once, otherwise you have no idea what was helping/hurting you.

I am still waiting to get in to see another rheumatologist. He's been out of the country all of December. I've been told he's agreed to "take my case" so here's hoping January holds some answers/new treatment options.

Thankfully, I have been able to continue getting out of the house more on outings - friends took me to  stores so I could get Christmas shopping done and Jim and I were able to go on a few dates to restaurants and then to look at Christmas lights (we've found a few restaurants in our neighborhood don't get loud and busy until later in the evening, so we slip in when we are almost the only customers and my head has been able to handle the ambient noise pretty well). I've also been able to start walking the dog by myself and we're up to almost a mile for walking. Slowly trying to build back muscle mass and stamina.

The two most challenging symptoms for me to deal with have been the head/brain fog confusion and the weight gain from the meds and water retention. We've found that I can converse and process conversation better at home, where I am in a familiar environment and the other inputs coming in (like background noise from the dishwasher or Maizie barking) don't affect my concentration since my brain interprets them as white noise. When I get outside of the house, that's where things get tricky. I struggle at the cash register if they start asking me questions about my day or my purchases. And by struggle, I mean, it takes me longer than average to think of my response and get it out of my mouth (and sometimes it comes out of mouth a bit mixed up) - it usually results in the person talking over me or just moving on to another question (and that confuses me even more!). As we reduce meds and as the inflammation hopefully continues to be reduced, this should get better (i.e. completely go away).

The weight gain has been a struggle because I look so different and I feel different. My face is very swollen and so is my torso. Steroid weight is different than normal weight, it's a different type of fat. It doesn't meld with your body like normal weight gain fat would - so this means it feels like my face is filling up with water and the pressure is going to make my eyeballs pop out. If you touch my face, you can actually feel the difference between the steroid fat tissue and my normal muscle/fat tissue. It's pretty weird. It also means it feels like I have a tight band around my torso and it makes it difficult to breath. I have a lot of water being retained in my legs too, so walking and bending my knees is a struggle. The constant fight against these "additions" to my body makeup  are quite honestly, exhausting, disheartening, and painful. I just hurt all the time and that is wearing on me.

But even in this, I see Him working. We had friends over for dinner (I can converse in small groups now (3-4 people - yay progress!) and one of them asked me why I thought I was able to get out more - was it the inflammation getting better or something else? I started to answer him and in that moment, I discovered an Ebenezer.

What came out of my mouth is this "I am able to get out more because I am becoming more comfortable with my weaknesses."

I am getting less self-conscious about how I handle spontaneous conversation and with how I look. This might sound minor, but reader, I promise you, this is HUGE. God is allowing me to see His power and sovereignty through my weaknesses. It encourages me that He is in control, that He knows what's going on, that He is not surprised by the length of this trial. I feel like I am learning to fight Him less and trust Him more.

"Some times the detour is the new path" - Vaneetha Risner

I've counseled myself and others that the other side of a trial doesn't result in your familiar "normal" but a new normal. And the old normal can look a lot better than the new, because the new is unfamiliar and uncomfortable and can still taste like the trial you've walked through. As Mrs. Risner  points out in her book, "The Scars that Have Shaped Me," we forget that the Old Normal wasn't all puppies and kittens, that it too was hard and a struggle at times. But we long for the familiarity, just as the Israelites longed for the Egyptian food when God was providing them manna in the desert (Exodus 16)

I still hope for complete healing. I still want this trial to be over with. But I am seeing the blessings in this trial, and I can't just sit on the couch and wait. I can be about His business even in this trial, Do I believe He heal me now? Yes. Do I want to know why this is taking so long? Yes. Do I want to, on the other side of this trial be able to say, "I saw God move and work even in the trial and I would go through it again to learn what I've learned about His character and my relationship with Him? Yes.

So, I wait expectantly, ready to be about whatever business He places before me - whether that looks like resting my eyes so my brain can get a break from processing, or praying with a friend who comes to visit, or date night including taking our dinner over to a nearby park and having a spontaneous picnic.

His power is made perfect in my weaknesses.

"My grace is sufficient for you, for my power is made perfect in weakness..."

Ladies and gentlemen, I am weak. 

"...therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Cor 12:9)

So, I will raise my Ebenezer here. To remember that God allowed me to see that His power is in my weaknesses and that boasting in my weaknesses reveals Him to others, points to Him, glorifies Him.

"Here I raise my Ebenezer;

Hither by Thy help I'm come;

And I hope, by Thy good pleasure,

Safely to arrive at home" (Come Thy Fount of Every Blessing)

Update - The Cost of Choosing Joy

It's hard to know how to start these updates out. We're halfway between chemo treatments two and three and while we have seen improvements in joint pain and fatigue and the frequency of my lupus flare fevers, we haven't seen the meningitis symptoms lessen. - the fogginess, confusion, pain, etc remain. So keep those prayers coming!

I started on two new meds a few weeks ago and we also started tapering the steroids that I am on. The last time we tried the steroid taper, I ended up back in the hospital because my head pain got pretty bad. On Sunday, I started on the dosage level that we got to the last time and my body is again rebelling - my head pain and fogginess has increased over the past two days. However, since I now know what's causing it (the taper) I am going to ride it out for a few days to see if things settle down - it also helps that I have Rheumo Doc and Pain  Management Doc appointments tomorrow, so I can get their weighing in on what's going on with the increased pain.

In general, I definitely have more endurance and stamina than I did a month a half ago. We were able to go to a friend's house for Thanksgiving! And while I wore earplugs the whole time and hid away where conversations were limited to one or two people, we were able to enjoy being out of the house and around dear friends.

Jim's parents came into town the week before Thanksgiving and were a great help in getting things done - like early Christmas baking and decorating and some yard clean - things that we really wanted to do but either I couldn't do on my own or they just weren't high priority given the current situation. Very thankful for them.

The Thanksgiving week was hard for me because we had planned to be in AZ celebrating with my family. Little by little during the week, I gathered small "hurts" to myself - things that I couldn't do because of this pain, this thorn in my side mengintis that just won't go away. And by the day after Thanksgiving (yes, a day in which the whole focus is on what we are thankful for, I get the irony) I had quite the list of things I WASN'T thankful for, things I was being asked to give up and it wasn't fair. It wasn't fair I didn't get to see my side of the family. It wasn't fair that I couldn't go Black Friday shopping with my girlfriends like I normally would (shout out to the hubby who did wake up at 530am and drive me to Home Depot so I could get the $1 poinsettias to decorate the front yard - he's not a morning person so it was very very nice of him), I couldn't do my Christmas baking the way I usually did it, or even watch Christmas movies because the sound the DVD player makes irritates the buzzing noise I already have in my head almost constantly. Not fair. Not fair. Not fair.

Holy temper tantrum Batman. I lost it and used many a kleenex as I cried out my woes and hurts and frustration and DONENESS with pain and suffering. I just didn't want to hurt anymore. Sure take these things away, but leave the pain out of it okay? Why do I have to deal with both?

My sweet husband listened to my cries and offered up two sentences. He said "well, I love you. And that's what I have to give to you, my love." And then he went outside to finish putting up Christmas lights.

I sat there, a bit dumbfounded. And then...yup..you guessed it... BUT GOD.

I realized a couple of things, one being a much needed apology to the husband, and two, I realized that the perfect and simple words that he had stated weren't just from his mouth, but from God. The Lord was reminding me that He loves me and that's what He's offering. His love.

And that thought brings joy to my heart.

I wear my "Choose Joy" hoodie to treatment. I have a plaque on the table nearest my usual sitting spot that says "Today I choose joy". What does it mean to "choose joy?"

There is a cost to choosing joy. 

In choosing joy, I am giving up self.  I am giving up my plans and choosing the plans that He has for me (Luke 9:24)

Choosing joy is dying to self, allowing His will to take the place of mine. To gratefully follow Him, in His yoke (Philippians 1:21, Matthew 11:30)

Choosing joy is desiring for His glory to be seen in He is doing and will do, not what I want Him to do (Romans 11:34)

Choosing joy is kneeling at His feet, available and teachable for His great work (2 Timothy 3:16-18)

Choosing joy is knowing He's working and moving, for His glory and my good (Romans 8:28)

Choosing joy is thinking of Him first (Deuteronomy 6:5)

Choosing joy is finding myself in Him (John 15:5)

Choosing joy is me decreasing and Him increasing (John 3:30) 

Choosing joy is knowing I am a daughter of God, that I belong to Him, and that He loves me (John 3:16)

Choosing joy is trusting Him to be the God He has already proven Himself to be (Isaiah 43)

I keep wanting to be at a certain place on this timeline of lupus and meningitis and pain and hurt and medicines and steroids. And He wants me somewhere different and I keep stamping my foot and huffing and puffing and crossing my arms.

Choosing joy is to sit where it may be uncomfortable and scary and unknown, but trusting and following Him wherever He leads, because His plan is perfect and He will be seen, not me.

"Looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God" (Hebrews 12:2).

The grace and mercy of the Lord to help me wade through these hard thoughts and my own frustration and faltering hope amazes me. I am so thankful that He allows me to seek Him and find Him and find comfort and peace in His word.

Today, I choose joy and pray that He will be seen through all of this.

Three Months

Three months ago, Jim drove me to urgent care that ended in an ambulance ride to the ER and we started down this twisty turny rabbit trail of meningitis and lupus and pain and learning and growing and being COMPLETELY DONE LET THIS CUP PASS and surrendering and abiding and wavering and being weak and amazed and choosing joy and struggling and...finally sitting down to try and make heads and tails of promises and word studies and lists of Scriptures and prescriptions and wanting desperately to document the perfect timing of God and the love of friends and family, to capture the kindness and generosity and love that we've experienced...that we've been overwhelmed with.

And I can't. There is so much. So I am going to give snippets, statements, glimpses into what we've seen and heard and felt.

The most recent? I had a massive emotional meltdown last night. A tiny part of that was me recognizing that as much as I have loved being able to prep and cook dinner again, it's been taking it out of me this past week as I've dealt with some more different/intense head/neck pain/and thought fog. I didn't realize how much that bummed me out and I didn't want Jim to have to pick up that task too...so we prayed. And we asked God for mercy...for the whole situation in general, not the food specifically. And at the same time we were praying, a coworker, completely out of the blue, texted to say she was making a meal to bring over on Saturday...and then this morning, my friend/helper for the day ended up bringing over a meal as well as taking me on an outing to pick up a few things. And then I realized that we already had one planned delivered meal scheduled for Saturday and I had forgotten another friend was bringing something over before the end of the weekend in prep for chemo week.

You guys.

In less than 48 hours the Lord provided 5 separate meals for us, several of them freezable for next week when I'll be out with side effects and Jim won't have to worry about dinner.

The Lord provides. Fully, completely, abundantly.

I could sit down with you and my phone and show you a slew of text messages that I've received over the past three months and give you stories in the double digits how each of those came in a dark moment, when I was struggling with this journey and ready to give up or where I was believing the lies that would flood my mind. Text messages and emails telling me that I was being thought of, prayed for, well-wished, held up.

I can tell you of feeling I've lost myself amidst the haze of medicines and inflammation and confusion and pain and how He reminded me that I am not defined by my list of diagnoses and meds and progress or lack of progress, but I am defined by Him and I belong to Him. And how as He moved in my heart and mind to assure me of this, at the SAME TIME multiple people would email me and text me verses and encouragement, all of which were of the same thought - that He has me. He knows me. He has not forgotten me or Jim.

This journey is being used I am told. Used to show Him to others. I know it's being used to teach me that I am the weakest of the weak, and in that lies His strength. His power made perfect.

The Lord is kind.

Even in the hard moments, the open-ended questions, the statements of "now we wait and see" and "this is going to take longer than we expected".received at a recent doctor's appointment.  At the SAME TIME, an email received from work, stating that I have received an astounding amount of donated leave time and am covered for this unexpected extended waiting period and healing time. COVERED.

His kindness is thorough, not lacking. Full.

The Lord is working and active and present and THERE.

A sweet friend's own journey has been a lifeboat for me - questions and concerns and relating and getting it. Understanding not wanting to try to do a normal task because that task has suddenly become SO hard and it's humbling and scary and new. And you wonder if things will ever go back to how they were. And then you realize, you don't want them to go back to where they were because you aren't who you were anymore. He's changed you and stretched you and made you cling more to Him and to know Him so much better and deeper. And the sweetness of that realization, that even in this, even in this, He is. And He has you, despite your best attempts to convince yourself otherwise and listen to the lies. You look at the evidence before you and...

My God is huge.

So three months...

He is abundant in all things. He is kind. He is I AM.

"Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever, Amen" (Ephesians 3:20-21), ESV.

"Wait for the Lord; be strong, and let your heart take courage, wait for the Lord!" (Psalm 27:14), ESV

Just an update

Getting some requests for an update so here's a bunch of the latest medical stuff :) - slog through as you desire!

Done with round one of the chemo for my lupus! The infusion two weeks ago went smoothly, no allergic reactions to any of the meds they gave and a huge blessing was having a room on the infusion floor all to myself! Jim teleworked from there and had plenty of room to spread out his stuff. We were there for about 6 hours, so not too bad. And I had soy Pumpkin Spice Latte as a pickup me afterwards. Win!

All hooked up to the port. The steroids have given me a very full face, it's actually called "Moon Face" but we call it my chipmunk cheeks :) )

The post-chemo recovery wasn't horrible. That day and the next I felt very much like I usually do after my previous Benlysta infusions (just tired and a little sick feeling). The following two days were pretty rough with nausea and fatigue and just feeling BLAH. We changed my nausea med and it worked better for me. A good friend of mine who went through cancer this year and last gave me some great tips and saved the day with the suggestion to eat toast. Toast tasted good and I went through a lot of bread in two days :)

Each day I've gotten further from the infusion, I have felt better - and that's exactly what should happen so that's good news. In fact, I've noticed that certain joints that were giving me a lot of problems are almost pain-free now and my fevers haven't been running as high. These are all good signs and we hope the next infusion (in two weeks) will go the same.

We also started to taper me down from the high dose of steroids I have been on for almost 3 months now (!!!) On Monday evening, I did the planned taper dosage and went to bed. When I woke up, my head and neck were shouting at me and my head was SUPER pressure-y, I could barely here out of my left ear. As Jim and I talked over breakfast, I was having a lot of trouble forming sentences in my head and when I did, it hurt.

I feel asleep on the couch and woke up with numb fingers and toes and gums (yup in my mouth). And I felt awful. Jim cam home and per Rhemo Doc's recommendation, we went to the ER. Blood work showed elevated white blood cells, which I shouldn't have because of the chemo, so they started worrying that maybe I had bacterial meningitis (yup, back to that). I ended up having three lumbar punctures to get some spinal fluid. Unfortunately the first attempt didn't go well - I ended up with an epidural! The doc got the numbing medicine in the wrong spot. Let me just tell you it's VERY scary to be lying on your stomach under an x-ray machine with a needle in your back and your entire bottom half goes numb and and the docs and nurses all start working fast and yelling things and such. I regained feeling within an hour, but still. I am so not a fan of lumbar punctures.

Due to the trauma from the first puncture, the second puncture wasn't good (there was some blood in my spinal fluid). So they admitted me for observation.

The next day, they did a slew of tests because the blood in the spinal fluid. (it can indicate some serious things that need to be checked pretty quickly). I had a third lumbar puncture and the blood had cleared enough to allow then to use it for their tests. I also did four hours of MRIs and CTs mapping my brain and spine. That was one of the most challenging things I have done.  My back really hurt from all the punctures and I had to lie flat on it and hold all my muscles as still as I could (hard because I have tremors in my limbs right now). It was hard. And I cried. The nurses were SO incredibly kind and supportive and empathic (it was a really long scan for them too) and we got through it. And Jim brought me dairy-free frozen yogurt as my reward for getting through it :).

The good news is that all the scans were normal enough for them to comfortable with sending me home since I was stable - even though we still don't know why my head pain is increasing or where the numb extremities are coming from. We ruled out some stuff I was worried about, stuff that could cause permeant brain damage and such.

Eating Tex-Mex to celebrate our four month anniversary - I know it's only four months, but it's a happy moment to remember and celebrate  :-)

It's very humbling and scary to realize that you aren't thinking or processing like normal. I can feel my slowness and hear my mistakes and I know they are mistakes but I still make them. I am glad that my brain and spine look okay and that hopefully once we get the inflammation in my head to go down, all my cognitive thinking stuff and motor skills will return to normal.

I am glad to be home recovering from the stay - I'm pretty banged up and shaking by all the tests so I've been doing a lot of icing and stretching of those muscles.

The nurses at St. John's Methodist were outstanding. I am so thankful for those that choose to go into the nursing profession and show genuine empathy and care for their patients. It makes a huge difference when you're lying in a hospital bed, scared, and have no idea what's going on to have that comforting hand to hold or explanation given or just an encouraging smile, so thank you to all you nurses!

I have an appointment with Rheumo Doc on Monday - again thankful for the timing of all of this - I already had that appointment schedule before all the hospital stuff this week. Thank you Lord!

So until then, I think I've regressed about a month for what I am able to do around the house since the head/neck pain is pretty intense. I feel like every hour I have to tell myself to choose joy (James 1:2). My friend visited me yesterday and I really wanted to spend some quality time with her and couldn't due to the pain levels. As I lay there on icepacks, I realized, 1) I've made more progress since my initial hospital stay than I realized (sometimes we can't see something until it's taken away and then we see what we had) and 2) I could choose to be joyful that I at least got to see my friend for a bit and hear about the awesome things going on in her life.

I am thankful that God is allowing me to choose joy and to be thankful when it's hard. I know He is helping me do that because I have so many moments where I just want to be done, I am definitely not getting through this on my strength, but His and the amazing people He has put in my life, like my husband. This has been a hard journey and it's not over. But I also know that He will continue to sustain me:

"But you oh Lord, are a shield around me, My glory,  and the lifter of my head." Psalm 3:3

Rehashing My David Moment

I'm not going to lie - the past couple of weeks have been tough. I had my chest port placed and that all went very smoothly and it's been healing nicely. In fact, I got to unexpectedly use it for the first time yesterday.

Over the past two weeks, my lupus joint pain has really flared up and the meningitis symptoms of a full head/stiff neck have increased. I wake up around 1am with severe joint pain and have to massage/walk it off over several hours. When we discovered that the first available slot for my first chemo treatment wasn't until October 17th, my face crumbled. "Two more weeks of this? I can't do it - things are getting worse, not better" was my inner mental dialogue. I was told to call every morning and see if there had been cancellations. I requested being moved to a different location for the treatment but my Rheumo Doc is pretty adamant about location due to their expertise and my complicated history. And the cancellations never happened.

This past Thursday evening was the worst it has been and it's because I took a sleep aid and it kept me asleep far past when I should have been up rubbing my joints. After my morning nap, my knees and ankles were so swollen I couldn't walk and my legs were bright red. I called Rehumo Doc, left a message, and then settled in to visit with a sweet dear friend whom I hadn't seen in awhile. Rheumo Doc called back quickly and told me to come in for steroids - he didn't want me going into the weekend like this and we didn't want anything to mess up my treatment on Monday.

My amazing friend, who was teleworking by the way, drove me all the way to the med center, waited for my infusion, and then brought me home. And she lives up in town so this was no short commute for her. I am amazed at the help God provides just when we need it. And I greedily soaked up an extra hour or so of conversation with my friend and greatly had my spirits lifted.

My first port access went great - so nice to only be poked once and it hurt less than an IV. I am glad that milestone is out of the way and one less thing I have to think about for Monday. The infusion nurse was kind and answered a lot of my questions about port care and such and I feel Jim and I are better equipped to deal with it and anything that might come up on Monday. Such a blessing. Already the steroids have helped with the joint pain...not with the sleeping though ;-) but I will take the breather, no complaints here.

Through the ups and downs of the past two weeks and the waiting, I was reminded how God likes to be remembered. The Old Testament and New Testament are filled with re-telling of all that He has done for His people. It's re-tell worthy folks, that's for sure. He is mighty and powerful. And perfect in His timing. Despite our efforts to get me into treatment sooner, it has been very clear that the answer is no, and while I don't understand that and have struggled with "but haven't I hurt enough yet?" I have been so sweetly reminded by several things.

This article by Joni Eareckson Tada has been a balm to my spirit and emotions. We aren't promised a charmed and pain free life, Christian or no. There is going to be trouble. And we are to walk joyfully in it, because, for me, my hope isn't in this world, but in Jesus Christ. And we don't walk it alone, He and the amazing support community He has provided are with us every step of the way.

And then I ran across an old post from 2012, where I was really struggling with the day to day stomach pain and wondering when it would end. I want to be the woman in this post, the one who was finding joy and hope even in the waiting. I look forward to Monday - it's a big day - it's when I feel like I start my offensive against lupus and the meningitis. It will take 7-10 days for us to notice if the treatment might be helping. I am praying for miracle of shorter time. BUT even if we don't see the results we hope for, I want to choose joy. 

Please join us in praying for a miracle, to see a difference even in this first treatment, to trust Him no matter the results, and to choose to be joyful when it's hard.

You are an amazing village of supports and prayers and positive thought senders and helpers - even in the darkest moments, knowing how loved we are - we see the Lord through that and can remind ourselves of His faithfulness.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing" ESV- James 1:2-4

My David Moment - repost from 2012

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::