OCTOBER 2012 Surprise – The Long Version
I was born in October, and I just LOVE everything about it, It is my absolute favorite time of the year, and so special to me for many reasons.
October 11, 2012, had all the promise of a beautiful crisp autumn day. The day dawned brightly with that familiar chill in the air that beckons you to open your box of sweaters that you promised yourself (last year) you’d have ready for such a day as this. Hubby and I had just days earlier returned from a wonderful Bermuda cruise with close friends, and I was enjoying splendid health. I was so pleased with myself that I hadn’t really gained any weight on our cruise. I attributed that to our new lifestyle of healthy whole-food eating and taking exercise six days a week. Nothing is perfect in anyone’s world, but in our little corner of the globe, at this juncture, “life was good”.
I began moving through my day, with way too many things “to do” on my already too-full list but that’s all part of being me. I am never bored, I never have enough time, and I’m always involved in something. I’ve learned the hard way that, well, that seems to be the way I like things. I seem to do best with a few plates spinning at a time. But suddenly in the afternoon of that perfect Autumn Day, my life came to a screeching halt!
Around late afternoon, quite suddenly I began to feel awful cramping in my bladder and ureter area. It was excruciatingly painful and it felt like I imagine it would feel if (God forbid) one was being slashed with knives or razors in their tender genital area. It literally felt as if I was being sliced in my vaginal AND upper interior vaginal area (near the cervix) with razor blades and that the cutting was going all the way up to my bladder. That pain level lasted for 6 LONG weeks. I would lay in my husband’s arms and we both cried together. I remember the pastor calling the whole church to pay. Our church televises its services, so even while I was home, I could see the congregation surround my husband and they prayed for me, for him and we cried again.
This kind of debilitating pain leaves you absolutely unable to work, create, or concentrate on even the simplest things. When one has searing pain, it is even challenging to pray. What used to take me 15 minutes to do would now take me 2 hours to do (if I could do it at all) simply because of the pain level.
Finally … a friend persuaded me to get some pain meds. I did not want to take any pain meds … I was afraid of addiction. After a few days of getting some relief from the constant pain, I started to feel like I could get out of bed. I started doing a few things … I could cook and clean a little. My business was all but dead, but I started to take an interest in that again too.
Okay, I’m sure you get the point by now. IT HURT. IT HURT A LOT! We kept saying “What is this”? I read hundreds of articles and countless hours on the internet. I couldn’t find an answer. I was beginning to feel like the doctors thought it was in my mind. Trust me it wasn’t in my mind.
There was a clue though. In the past (about 15 years prior) I had been diagnosed with a very rare illness known as Interstitial Cystitis. IC for short. It is chronic and there is presently no cure. In those days it mostly felt like a classic UTI, but the UTI doesn’t heal. At the high point of that affliction, I would visit the bathroom 50-70 times a day. I kept tedious journals and stayed close to home. Eventually, by God’s grace, it went away.
BUT,, this was different! Based on my history, the doctors called it IC, but my symptoms were different, so after about 1.5 years of doctor visits, specialists, physical therapists, etc., I was diagnosed with something even worse. Something called “PNE” or Pudendal Nerve Entrapment! OMG! I have a nerve, which is lodged in the base of my spine which is causing me excruciating pain … and this pain that I (initially) thought was only going to be a brief “season of my life” has now been with me for 5 years.
WHY I’M WRITING THIS ALL DOWN …
1. I’ve learned from experience that God speaks to me through journaling, and keeping track of events as they happen. I knew intuitively that the road ahead was going to be challenging and I didn’t want to miss and/or forget what God was doing and showing me.
2. It’s a way for those who love me to keep up with what’s going on with me. We live in such a fast-paced world that before we know it days, weeks, a month has gone by and suddenly a person will come to our mind whom we love deeply, or care for very much, or perhaps just even admire from a distance and wonder what’s happening in their lives. We wonder; are they okay? What’s new and/or what are they up to. So these entries are for you as well and I hope YOU benefit from my journey in the land of Interstitial Cystitis which shall be named IC. Some other reasons to “journal” this event are:
- When someone becomes chronically ill, it is often challenging to know how to act toward that person. You think to yourself, should I call? What if I call and they are asleep or resting? I don’t want to wake them. Should I write? What are the right words to say? It’s always that way when someone you care about is going through a difficult time. You want to do and/or say the right thing. But you’re sometimes afraid you’ll intrude.
. - Or what if they are a private person and/or talking hurts them more than helps them? What if they are a solitary person. One who is comfortable in their
“alone-ness”. What then?
. - Or what if you’re just so screaming busy in your own life, you mean well, but can’t get around to talking on the phone, let alone going for a visit. Or perhaps you live far away. And if you do call, what do you say?
And so, I’ve decided to keep my little what I’m calling my TENDERNESS JOURNEY JOURNAL here, online | YEP for all the world to see. Why am I calling it my “Tenderness Journey”? I’ve decided to call it that because one night (out of many) I was lying in bed in severe pain. On a scale of 1-10, it was a 100! It was at about 2:00 a.m.
Like every normal human, I was wondering why this was all happening to me. For some reason kept thinking about the word “pain”. So I looked up synonyms for the word pain. One of the synonyms was the word tenderness. Suddenly it was as if someone was whispering in my ear, and this is what I heard. “Angela, I am beginning the process of forming tenderness in you. It will take a while, and it will continue to hurt. It will feel at times as if your flesh is being torn, but I must do this work in you”. It will feel at times like you are all alone, but you are not. That’s when “it hit me” that God himself was in the room with me, and the reason for my pain was beginning to come into focus.
Now before you write me off as being crazy, let me confess to you that I (and those close to me) know my shortcomings all too well. Even as a woman who loves the Lord, I know that there are times I can be more loving, make better choices in human relations, and respond with gentleness rather than harshness. I felt that the Lord was telling me he needed to pull back yet another curtain shielding my eyes from a corner of my life he obviously felt needed to be discovered by me. WHY? Why would God allow one of his children to suffer and hurt, cry, and “miss life” as she knew it before? Well, it doesn’t take a spiritual giant to come to the conclusion that it was (and is) because he loves me enough to do purging work in me. He loves me enough to “take me to the next level”. To not allow me to rest on my laurels, or be complacent in my service to Him. In short … He was continuing the work of refining me. He was continuing to mold me. And it hurt, and it would continue to hurt for as long as the Lord allowed. That’s what I heard that night at 2:00 a.m.
I think that when a person goes through a season of suffering it can either make them bitter or better. I truly want to become better. I want to become more tender, more loving, and more concerned about people. There are areas of my flesh that are extremely “tender” (a synonym for pain) right now, but I want to become more “tender” in my spirit, my emotions, and my attitudes toward others. I want to look back on this time, having known for sure that I heard God’s voice and to learn more about Jesus. And so rather than focusing on the word “pain” I want to focus on tenderness. Every time I have a “piercing pain” I want to be reminded of how Jesus was pierced through for my sin. My hope is that my pain will lead to “tenderness of spirit” and things that God wants to show me.
This “season of pain” may last days, weeks, or months. Who knows! For some (Jane Grayshon) it lasts decades. But what I’m saying here is that if you want a place to come and “catch up with me”, it means that you are one who either has this condition (or something like it). Perhaps you’re experiencing deep pain right now and might benefit from my having shared my own season of pain with you. Or maybe you are wondering how things are progressing, and or how I am.
For my part, I hope this season of pain ends soon, but that decision will be in the hands of My Heavenly Father. I’m not trying to sound super-spiritual. It hurts and I want it to end yesterday, but even if God is merciful enough to me that this affliction is taken away, I KNOW he is teaching me through suffering. I know because that (like it or not) is what God’s word teaches. Thus this quote from C.S. Lewis. For some reason, when all is going well with us, we seem to ignore God or at least not call on him so often, or worship him as much. So I believe that God wants these “tender pages” to be part of this blog. So be it! I’m listening, Lord!
Great Quotes From C.S. Lewis on The Problem of Pain. “We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world.” ― C.S. Lewis, The Problem of Pain
“The mold in which a key is made would be a strange thing if you had never seen a key: and the key itself a strange thing if you had never seen a lock. Your soul has a curious shape because it is a hollow made to fit a particular swelling in the infinite contours of the divine substance, or a key to unlock one of the doors in the house with many mansions.
Your place in heaven will seem to be made for you and you alone because you were made for it — made for it stitch by stitch as a glove is made for a hand.” ― C.S. Lewis, The Problem of Pain
UPDATE: September 2023 This October 11 will mark 12 years. I am about 95% better BUT I have to still be careful about how long I sit. If the chair is too hard (restaurants) it can cause a flare. However I am grateful that the worst of it is over.
UPDATE: October 2019
This year marks “7” years since I was first diagnosed.
I find I think about it, and write about it less and less these days.
Remember I told you that there “is” light at the end of the tunnel. Well, there is. Though I’m not cured (yes I can hear you sighing) I have learned how to live in this condition. I would say my life is 90% like it was before this happened. What about that 10%? Pain medication helps me manage when the pain flares up. I usually take 1 pain pill somewhere between 3-8:00 at night. It all depends on what my workload is. If I know I’m going to do a lot of sitting, I know medication is warranted. There are many days I can go without the meds. It doesn’t mean there is “no pain” it just means I bear up under it. Recently I went 2 whole weeks without medicating. But many of those days I just tried to ignore it. I notice that if I go 3-4 days without taking something the pain seems to linger longer. I guess that’s because whatever is in my system has worked its way out.
How I wish I could stop meds altogether, but I am careful to “take as prescribed” and pray that one day this affliction and chronic pain will leave me.
But I AM productive, I can do housework, I can still have a real estate career, I still sing at church, bake bread from scratch, have the energy to write content for both my real estate and personal websites, and be a wife to my husband. Being a wife (in the area of sexual intimacy) is challenging because I always have pain for a day or two after. But it is worth it because, well, that’s how God designed us. I have a very patient, caring, and devoted husband.
So take heart, dear reader. None of us wants pain, but God has designed us so beautifully that we were meant to heal. My body seems to have “adjusted” somehow, and 10% or so of the time that I do hurt is manageable.
UPDATE: May 2017 – We are 3 months away from my 5-year “anniversary” with this affliction. I still suffer greatly from it. I still have to take pain medication. The difference between now and when it first began is that I’ve learned (and am still learning) how to best take care of myself. I say “no” more often than I’d like to admit, but I truly have to save myself for times when I “have to” sit. Like showing real estate, restaurant eating, going to a show, etc. Sitting for more than 10 minutes or so, depending on the type of chair, can IMMEDIATELY put me into a “flare”. And that “flare” is like having a hot poker sticking into the most private area of my body (my lady bits). The pain has been compared to end-stage cancer.
And so I press on and continue to ask God to totally heal me. There are still lots of activities I can do, but lots of things I have had to let go of. Stress is one of the biggest things to control. My Journey Journal chronicles the doctor’s initial diagnosis of Interstitial Cystitis. It turns out, after many many doctors, specialists, and diagnostic procedures that cost big bucks and all out of our own pockets, that the culprit is Pudendal Nerve Entrapment (PNE). So this is my story, and I wish I didn’t have to stick to it!
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