Well, He Didn't Run for the Hills

My appointment was fairly successful.  The doctor was actually pretty excited to see my packet/notes.  He couldn't believe all of the information I had put together.  You have to stay organized when you're chronically, I mean fashionably, ill.  The secretaries on the other hand didn't seem so fond of it.  With a history as long as mine that includes procedures, medications, and allergies, the electric sign in sheets don't exactly work well.  If you've never seen them, it's like an oversized iPad that you use to complete your medical history.  You can check off conditions that you have, medications that you take, procedures that have been completed, and allergies.  In my case, I have all of this information on typed spreadsheets.  The electronic thing barely lists the medications I'm allergic too and when you choose other it gives you one line to type them on (hunt and peck style).  Note to the machine:  there is a reason I have a list.  It's because they won't fit on one line.  Needless to say, the staff had to hand type them into the computer.

The doctor recommended more physical therapy, strengthening, and eventually another rhizotomy (nerve burning) to my back.  Some of the pain comes from my SI joint and he says that he can burn the connector nerves in the area to reduce my pain level and hopefully get the joint to close up a little bit.  From what I gather, the twisted vertebrates have left a large gap where my SI joint is and my other muscles have overtightened to compensate.  This could be impeding on the pudendal nerve or causing all of the pelvic floor problems that I've been having.  I was also asked to revisit the rheumatologist, just to make sure there weren't underlying problems.  I wanted to sign up for the nerve burning right then and there.  I've had it before on some other joints and it worked, so I was ready to jump right in.  Unfortunately, I have to do some other things before he'll delve into that.  He also mentioned prolotherapy to help strengthen and rebuild my ligaments.  It's controversial and it would be highly recommended that I go out of state for the procedure.

With all of this strengthening and physical therapy, my spine continues to pop.  I've had physical therapy about every other year or more for the last 12 years and it continues to pop and wiggle.  My question to him:  if we strengthen it crooked, how will that help the situation?  Needless to say, he was a little perplexed and gave me a magic 8-ball kind of response.  Will my back stay crooked?  Probably so.  Perhaps not.  Ask again later.  And so, here we are at a standstill.

The Chronically Ill Label

I am writing this propped up in bed, strategically arranged in a mountain of pillows with ice packs and heating pads.  The words chronically ill hang in my mind like a dead flower in a plant hanger that hasn't been watered in a year.   Chronic.  It's such a strong word, seemingly without an end.  It describes the situation (no doubt about that), but I'd rather think of it differently.  Twelve years of battling this and that, certainly would bring the word chronic to mind.  I spent hours searching the internet last night for some sort of answer and I think it is going to take a band of people to arrive at a definite conclusion for all of this.  You see, I have had back problems accompanied by sciatica since I was young.  I saw every doctor, had every scan in the book, various procedures, but I was stuck with it and they were perplexed.  Now, I have developed a rare conditioned called pudendal neuralgia, which many do not understand and there doesn’t seem to be a direct solution.  I think the two are related, but I’m not a medical doctor.

The pain is constant.  Burning, stabbing, aching pain that forces you to lie down regardless of what your plans were for the day.  It happens so often that you might even call it chronic.  There’s that word again:  Chronic.  It’s a touchy subject and I hate to be labeled the sick one, the chronically ill girl, the one who cancels plans, misses out on fun stuff, and even though achieved a 4.0 GPA in school had letters sent home that I would fail because I was hardly ever there.   I might add that I graduated with honors and obtained my Bachelor Degree, so take that snooty attendance police.

I’m changing the label, if not for my own sanity.   From now on, I shall be fashionably ill.  If you’re always running late, people don’t deem you “chronically late,” but rather you are fashionably late.  Why is that fashionable?  Is it because you took too long to get all dolled up or is it because the first one who comes to the party isn’t trendy?  I don’t know, but it sure sounds better than chronically.  Yes, I am fashionably ill, despite the fact that it isn’t very fashionable at all and I certainly can no longer dress in the fashion I was accustomed to.   Alas, I can only hope it will help.

If you’ve found me during your own search, I invite you to keep stopping by.  I’m not sure how often I will post, but I want to help.  I want to share my story.  I’ve been through enough that they’re practically throwing everything but the kitchen sink at me.  Maybe I can help you or at least let you know that you’re not alone.  I’ve found a few other bloggers who have helped to ease my mind in this unwanted journey.  I’m not sure where this will lead, but if it can help someone else, perhaps it’s worth it.