UPDATE: May 2017 – We are 5 months away from my 5 year “anniversary” with this affliction. I still suffer with it, and yet it is not (thankfully) as bad as it was in 2012-2015). From time to time, 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 me. 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, IMMEDIATELY puts 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). It’s been compared to end stage cancer. And so I press on, and continue to ask God to totally heal me. There’s still lots of activities I can do, but lots of thing I have had to let go. Stress is one of the biggest things to control. The story you read below chronicles the doctor’s initial diagnosis of Interstitial Cystitis. It turns out, after many many doctors, specialists, and diagnostic procedures costing huge big bucks (six figures) all out of our own pockets, that the culprit is Pudendal Nerve Entrapment (PNE) . So below is my story, and I wish I didn’t have to stick to it!
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 12 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 at the 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’s 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!
I began to feel an awful cramping in my bladder and ureter area, and this was to become what I thought was a “short-lived season of my life”. Initially … I was diagnosed with a very rare illness known as Interstitial Cystitis. It is chronic and there is presently no cure. It is excruciatingly painful and when it flares it feels as if one has razor blades cutting inside ones bladder. It leaves you absolutely unable to work, create or concentrate on even the simplest things. Because of the 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 t all) simply because of the pain level. BUT, in the final analysis, it wasn’t really IC at all, it was 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, unknown to me then, was to be with me for what is now almost 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 happens. 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?
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 the ways of The Lord. 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 pieced 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, 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 really cares and are most likely wondering how things are progressing, and or how I am. Or perhaps you’re experiencing deep pain right now and might benefit from my having shared my own season of pain with you.
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