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::