In reflecting on my day today, I am getting that comment more frequently lately, because I am slowly integrating "normal" activities back into my life. It's been a long 7 1/2 weeks and the road ahead is going to be anything but smooth. As I sit here writing these words, truly reflecting on the last 7 1/2 weeks and looking forward to what the future may hold I am brought to tears. I'm tired. I know God will give me the energy and grace and strength when I need it but now is one of those moments when I just need to cry and mourn the loss of so many things. Talk to me in an hour and you will find no trace of tears, but these quiet moments with the Lord...not angrily asking, "why me??!!" or throwing my fist into the air demanding that I get a different life, but simply crying out to the Lord...the physical pain, the energy that is non-existant after being gone from the house for only four hours--and for two of those all I was doing was sitting on the couch next to Heidi snuggling sweet litttle Hudson--the longing for a body that doesn't hurt, feel pain, or thwart "my plans" for my day. Then I remember the Gospel and I am thankful that One Day, all because of Jesus, I WILL have that heavenly body and I will worship Him without growing weary for all of eternity. On days like today, when all I want is to have ONE DAY to be able to be the wife I long to be for my husband--be able to get up with him, make him breakfast, pack his lunch, serve a Mom from church, do my treatments, maybe take a short nap, then make dinner and have energy to talk to him when he comes home. Those are the days I was used to for the last year and a half. That is what I am missing right now. My PCD pals will be able to empathize with having to adjust to a new "new normal" as things progress. Life for us is constantly changing...the reason that comment can put a burr under our saddle is simply this: there is not a single day of my entire life that I can remember not feeling some sort of pain or having to "cater" to PCD so that I didn't get sicker. I remember a manager responding with, "But you LOOK fine" when I asked to go home early because I was rapidly going downhill. All she could see was my typical "bubbly" self, serving the customers--she couldn't see the pain I was feeling to take in a breath, or that I knew I was on the verge of "the pains" which are completely debilitating, or that I pushed myself to come to work because I didn't want to have to call in again (and we really couldn't afford for me to miss another day...) and that as soon as I make it in the door at home, I will likely be in bed for the rest of the day. I have never known a day without a runny nose or a yucky cough or taking some assortment of pills, inhalers, or any other part of the myriads of things that I have to do EVERY DAY to simply be a good steward of what God has given me and give myself the best opportunity to be healthier. There is no "healthy" in our category...it's "what bug are you growing now, what antibiotic options do you have that you haven't already exhausted, how long will that work, if I don't take something what is the risk of long term damage to my lungs, etc etc etc.
The bottome line: I may not look sick but that is simply because if I "acted" the way my body felt every day, there would not be a day that I would want to get out of bed. You learn to live with pain and "push through it" to where you don't even recognize it as pain unless it gets really bad. God has blessed me a high pain tolerance and two Aunts that are nurses. I distinctly remember one night when I left a Blue Chip Leadership meeting early from the UofA where I was attending school because I started to get "the pains." They got so bad I coulnd't make it home so I stopped at my Aunt Dawn's house. She asked me to rate my pain on a scale of 1-10. I told her 6 and I remember her turning to my friend, Melisa, and telling her, "That's a 12 on a 'normal' person's pain scale." My eardrum burst as a child and I never even complained to my Mom. My sweet hubby knows me well enough that he can see through the "mask" and I can be in debilitating pain towards the end of small group (nights are bad for "the pains", as well as sugar, which I have almost totally cut out of my diet now...) or any other get together and no one would have a clue but I can catch his eye and he knows we need to leave. As soon as we get in the car, I lay the seat back and sometimes am in tears from the pain. He knows to grab my purse, Bible, casserole dish or whatever else we may have brought with us and that I need to get inside and get ready for bed as quickly as possible because laying down is the only relief from this pain. Also, you don't typically take pictures of people when they are miserable...so blog pictures and face book pictures can be deceiving...there are pictures I have put on here of me smiling and being playful etc, but it's hard to explain and capture the moments when I'm throwing up, my sinus headaches kick in, the pleuritic (sharp, stabbing) pain in my chest from inflammation in my lungs, the unending menagerie of treatments, vitamins, doctors appointments, tests, procedures, etc etc etc. The daily grind that can be very difficult...so when you are exhausted and in pain but still smiling and no one can "see" your pain or "disability" and they say, "Well, you LOOK great"...what do you say without unloading how you "really" feel? You know in your heart they may not know what else to say or they are simply trying to encourage you, but when you feel miserable and as soon as you get to the car to head home you will lay the seat back and crash for the rest of the day and be miserable because you actually attempted to be "normal" for a few hours...it's hard to put into words the feelings those four little words can bring screaming into your head...praise God for His Spirit living and at work in me because without Him, I don't know how I would endure!
So how am I "really" doing? I think I am "doing better" because I am simply learning to rest and not try to rush out the door in the mornings. I am making my care a priority--I even have a check list of the 20 "bare minimum" things that are top priority for my "optimum health" at the moment. In making it to a full church service (albeit sitting during Worship...although I did get to snuggle Elisha!) and we went out to lunch afterwards I was toast when we got home. We had made plans to go to the movies in the evening and I REALLY wanted to go, but could tell that if I pushed it and went, things would not go so well. As it was, I was exhausted for the afternoon/evening but got a good night's rest. Looking back on today, I was able to get a couple things checked off the to do list (like calling on an insurance claim that we shouldn't owe!) and got to fellowship with a dear friend and snuggle a sweet baby. Remembering the blessings instead of looking at the "take aways" is so helpful...but the tears and the "take aways" are real and learning how cry out to Him, confess any sin, rely on Him and His plans for your day, and look forward to His promises is a matter of faithfully placing one foot in front of the other, trusting that He will never lead you astray. He doesn't promise it will be easy--but He does promise to walk with you through the valley.
Jord and I standing on a rock in the midst of a stormy sea...praise God for Jesus!!
Rachelle :)
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