Glad to have had E’s company today at the clinic. So sweet of her to come along – and wait with me. Over coffee and cakes, we waited – for the clinic to be ready, and for my bladder to fill up :p
Later, when I got good news at Dr. D’s, it was a bonus to have someone to be excited with, immediately
Pray on. Wait on. Press on.
Today was also World Lupus Day. As I was preparing to go see Dr. D, I ended up with this reflection:
“It’s World Lupus Day.
For me, 14 years.
Last night, I was preparing for another medical appointment this afternoon. Ran through the self-recorded medical history since last visit. Print. Ran through spreadsheet of clinical data. Print. Double-checked list of current medicines with dosages. Print. Update cycles list and check the legend. Print. All set to give Doc today.
“Wait a minute. You print the info for the doctor??”
Yes. Or at least, I make sure I’m ready to give a detailed account of everything that’s happened since the last visit (which, depending on the specialty I’m seeing, could be between 4 weeks to 1 year). I started tracking my own condition quite soon after my initial diagnosis. That proved to be a pretty foresighted thing to do.
Over the years, the range of specialists has grown. Rheumatology (RAI), ENT, Eye, O&G… At a number of places. TTSH, NUH, KKH, Mt E, Mt Alvernia… I’ve come to the conclusion that no single doctor will ever have the full picture of my health (or lack of). So I do what I can, since I spend the most time with me (and I don’t fully understand myself either! So, much less them.)
However, part of the reason is also that I don’t always get the same doctor every visit. Some doctors are great – the moment I see them, I feel much better already. These are the ones I can have a conversation with: asking questions, asking for meaning of the numbers, asking if there are things I should pay more attention to. Some will ask about other parts of my life, in a bid to understand the situation(s) surrounding the results. A few have a good sense of humour – we laugh together at the darkness, and I feel much stronger. One gives me life & love advice – at the start of my sabbatical 2 years ago, he grinned and said, “Now go and get your life back!” Another has even battlecried, “We’ll take this beast down together!” … But there are also visits where I leave the room feeling utterly worn, hopeless and bewildered. Enough time has passed for me to know which these are; I brace myself and say an extra prayer.
Doctors aside, I almost always have a great time at the blood tests. Especially when it’s a 6-test tube sample or laborious 24-hour urine sample, it helps to be able to chat happily with your nurses – about everything and nothing! And their kindness. At my most recent visit to RAI, the nurse on duty took my BP, looked at it for a bit and said, “Good. Well done.” Chuffed for the rest of the day
Every time I prepare for a medical appointment, I also look back a bit at some special emails. Emails to a closed group, from different seasons of my life so far. Emails that are long, technical, and not always uplifting. Medical update emails.
That mailing list has changed – people come and go. I used to mourn that, but I’ve learnt to let go. I choose to be thankful for those who are here.
I’ve kept their replies – comfort in stormy seasons. Often, it isn’t about the solutions and wise words they offer, but their recalling of biblical truths, and the honesty to admit they are also clueless, that help. Or unexpected, well-placed humour … Or just silence in the face of puzzling difficulty. And we pray. And wait.
“Don’t be afraid, the Lord is with you in all that is happening. I will pray that the pain will lessen and for the kidney test results. We won’t be seeing you this Sat, is that right?…” – GN, 1999
“But seriously, don’t let it stress you out… take it easy, like me… (as reflected in my grades, but that’s not the point here…) ….. you will NEVER walk alone (ps AK: Man U sux)” – TS, 1999
“Dear girl… I don’t wanna even pretend that I understand what you’re going through…” – PS, 2001
“Well. At least it’s just… slightly higher. Well. I’m. slightly overweight too! :p” – SH, 2002
“Wendy!!! Go to the A&E!!!!!” – AK, 2002
“Dear Wen, in the helplessness of feeling that no words would bring the comfort that I desire so much for you, I am thankful that we serve a God bigger than both of us and your circumstance. Ps 73:26” – LW, 2003
“Praise God for the good reports! Keep on living life, Wendy” – AS, 2004
“But I pray that you will keep believing with me that one day we will be with Jesus, and on that day all things will be made new, and we will look back at the fires we walked through on earth and rejoice with the angels that we came through as purest gold…” – CL (then CC), 2004
“I am actually quite encouraged (& entertained) by your mails… alright, I am supposed to be prayerful for you – I do tooo u know :p” – TK, 2005
“I can really see the hand of God working in your life – no matter what you’re like a bu dao weng, bouncing back cheerily at each instance/encounter. Keep that way, dear. But if ever you are tired and want to rest/cry/sigh, remember your friend here. I’ll be here for you…” – ET, 2005
“I think it’s very fortunate that God has blessed you with a sound, wise and clever mind. I can’t imagine someone not very organised or clever having to sort this out!” – BC, 2006
“When is your next TTSH appt? Can I accompany you for that? I’ve become quite accustomed to TTSH now, having been there several times…” – SM, 2007
“Will continue to lift you up to the Lord in prayer. Wo men yi qi jia you!” – AL, 2007
“Hey Wen, Thought you’d like to know that I’ve finished the first leg of my project entitled ‘Immunosuppressive drugs in Lupus Nephritis’. I doubt it’s going to be very relevant to you at all, since you don’t present with the renal complications of the condition. However, the drugs I considered include 2 which you’ve used before: Azathioprine and Cyclosporine, so I’ll just attach it.” – GH, 2008
“I find it reassuring to know that God is not limited by the things/conditions that we are limited by One of my fav verses: Phil 4:5-7” – WK, 2008
“What you and D are going through, only the Lord Himself will fully understand. He will be the rewarder of those who put their faith in Him. Oh God, bless these fighters!” – LS, 2008
“haha Wendy, sounds like the eggs that were hatching in Aliens and Predators Will continue to pray that God’s healing Hand will rest on you…” – FF, 2009
“How can you restrain yourself from such a therapeutic tonic as ice-cream, for all you know, you may have been instantly healed should you enter that parlour :p” – JL, 2009
“I do have my prayers that you will be finding just the best results from your medical tests. It has been a rough patch for you, I realize, and I’m glad that you had your good trip to Canada to think about. Hopefully soon you can start to plan toward the next trip. You know you have a good number of friends here in Ottawa who join me in that wish.” – TM & DM, 2011
“You do what you have to do to deal with the situation. We will all be rooting for you and thinking positive thoughts. When you have the time and inclination to send along an update … terrific. As an honourary YaYa, you have the love and support of all the YaYas. Be patient with yourself and aim for the long term goal of feeling better and being stronger. My motto is “Do it right not fast.”” – DW, 2011
“Dear Wens: While reading your medical consultation/test, I can empathize your concern and certain apprehension. I like to encourage you to draw nearer and hold fast to Him who is faithful. He has borne our sickness on his body on the cross and by His stripes we are healed. May our Lord give you a merry heart this day :)” – DL, 2011
“Woman, if you do weights now, you can wrestle the whole choir to the floor. Go build some muscles. Hang in there.” – KS, 2012
“Thank God that you have not lost your song throughout the many storms. Yes, He has given us the victory, we win! GB” – LS, 2012
“My prayers are with you Wendy. I will read some psalms for you. Wish you were here – been 25-28C this week and sunny, sunny, sunny…..snow all gone, people running by the canal (which still has ice in it!), biking…very unusual weather. Breaking records everyday! Lots of love,” – TS, 2012
“Fight, fight, fight!” – DY, 2012
“Oh Wens! Praying for you. Fight!! Hugs.” – SO, 2012
“Sounds like you have a lot of things to juggle… hang on and may His Grace sustain and keep you going. And Rabbit to hold your hand when you need to take your meds. =)” – EW, 2013
“Your name just surfaced in my mind yesterday and I prayed for your new treatment. God helps us to pray for you.” – PC, 2013
The disease of a thousand faces, outclassed by a thousand graces.