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::