I continued to pray for another two weeks before I felt peace. I felt peace about God’s provision in other forms [besides home health], though I didn’t know how [He was going to provide]. I felt that He didn’t want me to strive on this particular item. During these two weeks I remembered my original prayer before the assessment – Father, I’ve tried to do what I believe is responsible in my situation; I’ve sought help. I’ve spent hours tracking this down and have hit road block after road block, and I’m exhausted. It’s taking an emotional toll on me too. I know that, regardless of the decree, You are the one who moves the heart of the king, so I want to ask You to make the results of this evaluation final and give me peace about accepting it either way so I can move on. If You do want me to fight a “no” then please be very specific and clear so that I understand what I need to do. If you want me to refrain, that’s fine. I will do either in faith, but I need a clear peace and direction that can only come from You.
Remembering these prayers and trusting God for the results set me up for the next leg of this journey (pun almost unintended…almost). When the peace came about letting go of my hope of home health, I prayed again. Some days are a constant breath of prayer, of necessity, of dependence upon God for every little thing.
Ok, Lord, I’ve heard You. Thank You for making Yourself known to me and for leading me to the right and to the left. I don’t know how You are going to provide for me, but I have no doubt that you will…at least at the moment I have no doubt though I can’t say I won’t doubt tomorrow! But anyways, God, I’m waiting for you to show me the next step and I’m willing to take it. Help me not be anxious, but to embrace a simple faith and trust.
As the weeks rolled on and I received more information about what having CRPS for the rest of my life meant from a more balanced and practical perspective, I began to see that managing this disease successfully was going to require at least as much work as I’d already put into managing my GI diseases. And I was pretty scared. I didn’t want to go through that again – having to back-burner almost all of my goals, dreams, and hopes so that I could front-burner taking care of all the loose ends and details of my unraveling health, again putting the “fun stuff” of life on hold so that I could focus 100% on the “necessary” stuff that, honestly, is just no fun at all.
It’s kinda like…the first time I had surgery. Before the first surgery, I had no idea what to expect recovery-wise. I mean, I’d never had surgery before, and this was a big reconstructive surgery of my right leg. I didn’t cry or wine before my surgery…I was naive. I half-smiled to my Mom and told her I’d be okay as they wheeled me away on the stretcher into the operating room. Naive is sometimes good, because if I had known what lay ahead, I simply wouldn’t have had the surgery, and today there’d be no hope of me walking at all; I would almost surely have been wheelchair bound for the last 9+ years of my life! The recovery after my first surgery was a living hell, in short. But because I was born with two legs, two deformed legs, I then had to have my left leg reconstructed too.
Do you think, after walking through my personal hell the first time, I was so composed before the second surgery? I think not! Granted, I held it together, but it wasn’t without tears, tissues, and a stuffed animal to hug! Instead of me telling Mom I’d be okay before they took me into that cold OR, my eyes asked her if I’d be okay this time. She said I would, and I nodded uninspiringly as I wiped the snotty tears away, lip quivering. I was rightfully AFRAID of having to go through it all over again.
In a large sense, that’s how I felt a few weeks ago about battling CRPS/RSD after I’d already battled Celiac Disease, Gluten Ataxia, Small Intestine Bacterial Overgrowth, IBS, Motility Disorder, Pelvic Floor Dysfunction, Mental health problems, and Fibromyalgia just to name a few. I wasn’t quite sure I had the fight left in me.
There are several fears I’ve been batting around. One is the fear of losing more of my identity to this disease. After all, the last few years of my life have been strictly devoted to fighting my list of other diseases. It’s a consuming fight, and it seems to take over my life at times, which I hate.
As I prayed and thought through it all, I remembered who God has made me to be. He’s made me a stubborn ol’ cow, a hard worker, He’s given me a type A++ personality and a ton and a half of tenacity. I’m an all-or-nothing person to a T, or to a fault; depends how you look at it.
What I do have available to me is good, honest hard work. Physical exercise, desensitization, exercise, and more desensitization. I have experience from years of fighting chronic pain and illness, so I know many of these ropes like the back of my hand, and I have the medical knowledge from OT school to read wordy medical journals and understand most of what they’re saying, and to value my independence and all the hard work required to keep it…. God’s blessed and cursed me with an undeniably strong will. I also have available to me the grace and empowerment of God which will meet my needs. That right there provides me with an infinitely greater equipping and stack of resources (God owns the cattle on a thousand hills) than I believe most patients will ever have at their disposal.
I essentially took this stubborn ol’ cow by the horns, shook her up a little to straighten her out, and pretty soon I began to recognize the path God was leading me down, though not without a little bucking.
It’s a familiar one – THE PATH OF SELF-CONTROL. Ah, the Fruit of the Spirit.
But God, I thought we’d already been down this road. I learned a lot, and you’ve increased my faith as I’ve depended on you in the last year and a half on the Specific Carbohydrate Diet (here I provided God with my list of things I’d learned to say “no” to like foods and having a “free” schedule, but it was much longer than that…guess I thought I could impress God?) and embracing drastic lifestyle changes (He’s impressed by the word “drastic,” right??…right??). So, do we have to do this again?
God’s still small voice answered me. “Daughter, did you just hear what you prayed? You recognize how I’ve increased your faith, dependence, and self control in the last two years by walking this path. It’s a path I want us to continue traveling in your life because it was clear cut just for you by My hand. No other path will do in accomplishing My perfect purpose and will in your life. I am showing you more of Myself, more of My faithfulness. I’ll supply the grace; you need not worry. Just be willing to follow Me.”
Clumsily, I began mentally listing the times God had met me in my need and supplying the grace He promised. The list grew and grew. Every day, in fact, He’d pulled me through. I couldn’t claim He was unfaithful or unwilling to provide what He promised, at least not when I was truly willing to receive. After all, anyone can offer you or me a gift, but if we won’t open our hands and faithfully receive it, then we have no right to, with our hands balled up behind our backs and our noses (and butts) sticking out in mockery, say “But you don’t really make good on Your promises…see? You haven’t given me that gift yet!” That’s just evil and it grieves God, who has the heart of a Giver. It also sickens me the more I consider how often I’ve done this to God over the years. Lord, please forgive me!
In order to incorporate more exercise, desensitization, and house care into my daily life – the outworkings of self control – I needed a schedule overhaul. Previous attempts at creating a rigid daily schedule had failed for multiple reasons, not the least being the unpredictable nature of my health day to day and many doctors’ appointments each week throwing off that perfectly timed-to-the-minute and color-coded beauty of a schedule. Once one thing on the schedule fell through, it was like a domino effect and the remainder of each day fell apart as I played catch-up constantly. If a bridge is made beautifully but too rigid, it will break under stress. I knew, therefore, that an exactly timed schedule wouldn’t work. I’d had good success with FlyLady’s system for managing things at home and felt that I could give her generalized Morning, Afternoon, and Evening routines/habits (which were already a part of my daily life) a bit more structure and also included my specific habits that needed to be incorporated into my daily life.
Being the geek that I am, I pulled out my favorite geek gadget – my 1990’s style Timex Ironman Datalink USB watch (geeks click here for more deliciously geeky details; non-geeks, skip the next 2 paragraphs). Though it looks manly, this watch is AMAZING and really helps to add structure to my life. During college, it was my best friend, and when I need to make major lifestyle changes, my watch is how I git ‘er done. The watch is FULLY PROGRAMMABLE through my PC using, well, 1990’s software of course. Despite the outdated looks, the amount of customization available to all of the “wrist apps” and watch functions is enviable. In many ways it replaced my PDA in the early 2000’s and eliminated the frustration of battling Microsoft ActiveSync software jumbles. I don’t have to charge the watch; it has a low-drain LCD dot matrix display and runs on a regular watch battery, and it hooks up via USB to my computer (must install drivers first; no plug-n-play). I have a few of these watches in a box because when one breaks, I keep fixing them so they’ll last me a while – you can’t buy them anymore, they were discontinued by timex (boo!). The beauty of this watch, besides being easy to use (no charging, super fast sync with my computer, good button controls), is that it’s ATTACHED to my body 24/7 and because I don’t have to fish a “brick” out of my pocket/purse every few minutes, it actually gets used all day; sometimes the lower tech solution really is preferable to the higher tech but more cumbersome and life-disrupting options on the market these days.
In my watch I store emergency contacts, notes on medical conditions and allergies, my daily alarms for medication with text reminders, schedules, a countdown timer which I use for cooking (helps that the timer goes with me everywhere since it’s on my wrist and I can’t ignore it…less likely to burn the house down when cooking!), and an INTERVAL TIMER which has become my new best friend.
I didn’t know what an interval timer did until a few weeks ago when I was trying to put together this new schedule, but I thought it could be helpful so I googled. An interval timer is a circuit of timers set up so that the first timer alarms and terminates at the end of its specified countdown time, initiating the start of the next timer within the circuit, and so on. Being that my watch is so awesome, I was able to develop a circuit or string of interval timers and give them text based names to remind me of what I should be doing during each running timer’s countdown time. Here’s what it looks like in real life:
|MORNING – 2.00 hours||MINUTES|
|SBI – meds||05|
|Wash face + makeup||15|
|Breakfast + meds||25|
|Brush teeth + floss||05|
|Quiet time – Bible reading||30|
|AFTERNOON – 1.25 hours||MINUTES|
|Lunch + meds||25|
|NIGHT – 1.25 hours||MINUTES|
|Hot Spot cleanup||15|
|Check calendar for tomorrow||03|
|Pick out clothes||05|
|Launch pad – get stuff ready for tmw||10|
|Brush teeth + floss||05|
So, for example, during my afternoon routine, when after 25 minutes my lunch + meds timer alarms, it notifies me that the next thing I need to do is my desensitization exercises for 15 minutes and begins this new countdown, and when that 15 minutes is up, it tells me it’s time to wash the dishes and that 10 min timer begins counting down.
I’m finding this interval timer setup is working very well for me because it keeps my mind focused on the tasks I should be doing. It also has some flexibility, however, because if someone comes to the door or I get a phone call or there’s some other type of interruption, I can pause/stop the timer and resume the countdown when I’m free again. This addresses the problem I had with rigid schedules in the past where that domino effect where if one scheduled piece of my day didn’t go as planned, the whole thing crumbled in sadness. Now, I can just go back to where I left off without the stress!
This is my general daily plan (below), though it often shifts a bit due to lots of doctor’s appointments. Sometimes I get up at 5:00am to be at a doctor’s appointment on time, and the next day I may need to sleep till 8:00am to help recover. The time is taken out of the Discretionary categories. I just start my corresponding interval timers at the time that best fits my situation that day.
|General Daily Schedule||Times|
|MORNING Routine (above)||7:00am – 9:00am|
|Discretionary Period 1 – Cooking, Exercise, Phone Calls, Business, Housework||9:00am – 12:00pm|
|AFTERNOON Routine (above)||12:00pm – 1:15pm|
|Discretionary Period 2 – Cooking, Exercise, Phone Calls, Business, Housework||1:15pm – 4:30pm|
|Work at Job||4:30pm – 9:00pm|
|NIGHT Routine (above)||9:00pm – 10:30pm|
|Sleep||11:00pm – 7:00am|
Some days don’t work quite this perfectly – I deal with exhaustion from all my health problems, so sometimes I need to stop doing everything and just REST. Many nights I go to bed by 11pm, but my mind is spinning and I find I need to get up because I cannot sleep. So I write on my blog here or read or pray until my brain or my pain calms down enough that I can sleep. But so far, I’ve been very pleased with this schedule as it has given me a bit more freedom on the weekends to go do something I enjoy when I have the energy to do so. I am being more productive.
Because I believe God is leading me to live a more structured, self-controlled life, I am trusting Him for the grace it requires to pull it off day to day. I wake up in faith for the grace I need.
So many people in the last 2 years have said to me, “I don’t know how you do it. I couldn’t live on your diet! That takes a lot of self control. I need more self control in my life, but…” and they trail off, telling me how their past attempts at “getting” more self control in their lives failed. I understand; been there, done that myself. Thing is…if we really believe that GOD HIMSELF wants to work more self control (the Fruit of the Spirit) into our lives, as Christians, we need to trust Him to do it and walk it out in faith, believing that He’ll provide what we need to git ‘er done. See what I’m saying?
FAITH IS PRACTICAL! FAITH = ACTION! Faith meets us in our everyday lives. It’s not mystical, though it is a mystery. Faith is given freely by a loving God, and He won’t hold back if we ask Him for more faith…yet we have to be willing to open our hands and receive the gifts of God. Then, in His power, we USE those gifts for His purposes.
Now faith is the assurance of things hoped for, the conviction of things not seen. 2 For by it the people of old received their commendation. 3 By faith we understand that the universe was created by the word of God, so that what is seen was not made out of things that are visible.
….6 And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists and that he rewards those who seek him. 7 By faith Noah, being warned by God concerning events as yet unseen, in reverent fear constructed an ark for the saving of his household. By this he condemned the world and became an heir of the righteousness that comes by faith.
8 By faith Abraham obeyed when he was called to go out to a place that he was to receive as an inheritance. And he went out, not knowing where he was going. 9 By faith he went to live in the land of promise, as in a foreign land, living in tents with Isaac and Jacob, heirs with him of the same promise. 10 For he was looking forward to the city that has foundations, whose designer and builder is God. 11 By faith Sarah herself received power to conceive, even when she was past the age, since she considered him faithful who had promised. 12 Therefore from one man, and him as good as dead, were born descendants as many as the stars of heaven and as many as the innumerable grains of sand by the seashore.
13 These all died in faith, not having received the things promised, but having seen them and greeted them from afar, and having acknowledged that they were strangers and exiles on the earth. 14 For people who speak thus make it clear that they are seeking a homeland.15 If they had been thinking of that land from which they had gone out, they would have had opportunity to return. 16 But as it is, they desire a better country, that is, a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared for them a city.
17 By faith Abraham, when he was tested, offered up Isaac, and he who had received the promises was in the act of offering up his only son, 18 of whom it was said, “Through Isaac shall your offspring be named.” 19 He considered that God was able even to raise him from the dead, from which, figuratively speaking, he did receive him back…..
23 By faith Moses, when he was born, was hidden for three months by his parents, because they saw that the child was beautiful, and they were not afraid of the king’s edict. 24 By faith Moses, when he was grown up, refused to be called the son of Pharaoh’s daughter,25 choosing rather to be mistreated with the people of God than to enjoy the fleeting pleasures of sin. 26 He considered the reproach of Christ greater wealth than the treasures of Egypt, for he was looking to the reward. 27 By faith he left Egypt, not being afraid of the anger of the king, for he endured as seeing him who is invisible. 28 By faith he kept the Passover and sprinkled the blood, so that the Destroyer of the firstborn might not touch them.
29 By faith the people crossed the Red Sea as on dry land, but the Egyptians, when they attempted to do the same, were drowned. 30 By faith the walls of Jericho fell down after they had been encircled for seven days. 31 By faith Rahab the prostitute did not perish with those who were disobedient, because she had given a friendly welcome to the spies.
32 And what more shall I say? For time would fail me to tell of Gideon, Barak, Samson, Jephthah, of David and Samuel and the prophets—33 who through faith conquered kingdoms, enforced justice, obtained promises, stopped the mouths of lions, 34 quenched the power of fire, escaped the edge of the sword, were made strong out of weakness, became mighty in war, put foreign armies to flight.35 Women received back their dead by resurrection. Some were tortured, refusing to accept release, so that they might rise again to a better life. 36 Others suffered mocking and flogging, and even chains and imprisonment. 37 They were stoned, they were sawn in two, they were killed with the sword. They went about in skins of sheep and goats, destitute, afflicted, mistreated—38 of whom the world was not worthy—wandering about in deserts and mountains, and in dens and caves of the earth….
(Hebrews 11, ESV)
Obviously I’m not being sawn in two …well, I might feel like it some days but… 🙂 The point is that this faith, characterized by of these people of God listed in Hebrews 11, is available to YOU AND ME. We CAN do what God CALLS us to do, through His power, if we believe and set our hands and hearts to do it, even if it’s as crazy as building an arc without power tools.
… self-control. Against such there is no law. – Galatians 5:22-23