Mentally Exhausted

Being fashionably ill is incredibly exhausting and mentally draining.  Something happened today that right now I can not say much about.  I walked around in a daze.  It was as if someone cast a fog over my entire day or almost like it wasn't real.  Don't worry, it isn't directly health related, but my situation does not make it any easier.  My health is the same, but it's a problem.  It's always a problem, but now it feels like a bigger problem.  I'm not working and that's a major problem.  I started my own business because I was fashionably ill and lost my corporate job due to illness.  Unfortunately, it's just hard to work if you're in pain, medicated, or in bed -- whether it's your own company or not.  Anyway, I have spent today wishing, hoping, and praying that I can get some pain relief so I can move forward.

Everything can change in a split second.  Your life can be turned upside down instantly.  Now, more than ever, I want to be healthy.  I need to be healthy.  I need to save us.

Fell into Place

In my last post, I mentioned the fall on the ice a few days ago.  At physical therapy today it was confirmed that when I fell, I knocked my sacrum back into a normal alignment.  I even shoved L-5 a smidge to the right to make it slightly closer to normal.  What are the odds?  That has to be a once in a lifetime type of thing, right?  My back is still sore and I still have some residual coochie burning, but on a positive note I can sit down without a pillow!  Yay!  My PT asked if she should just start shoving her patients onto the floor.  Whatever works, right?!

I don't suggest anyone with these conditions or any other conditions (or those who aren't fashionably ill) purposely fall down.  Obviously, it's dangerous and the odds of correcting a problem have to be slim to none.  Maybe I should play the lottery this week.

Add Ice to Reduce Burning in a Non-Traditional Manner

If you have burning pain, you probably use ice.  Icing helps reduce pain and numb the area.  Yes, I sit around with an ice pack in between my legs on occasion.  On Friday however I tried icing a little differently.

I busted my ass on our snowy/icy walkway just 20 minutes after leaving physical therapy!  Seriously?  How do I manage this?  I'm bruised on the left side, pulled something in my shoulder, and scraped up my hand.  By the time I got into the door of my new house, I was bleeding all over my paint swatches.  As these things usually go, I imagined that I'd be in bed for -- well, forever really.  I was sore on Saturday, but definitely mobile and no more than usual.  I iced my back Saturday night and the back/sciatica pain were flared up for all of Sunday more than usual, but again still very mobile.  Then I noticed it.  The holy shit moment.  I wasn't on fire in the, well, you know.  How could it be?  By Sunday evening my back was hurting pretty bad and my leg was hurting, but I was sitting down in jeans and not on fire!!  I'm going to have to explore this.  Naturally, I don't want to slip on ice every other day, but it seems like a massive hit to my left hip knocked my right side into place.  Whether or not it's the right place, I don't know.  If it's not pushing on the pudendal nerve (the burning pain nerve), do I really care?  Can I go to a PT or a doctor and ask for a massive whack to my left side to shift everything over?

Obviously this is not a cure.  Things will settle back into their old uncomfortable places, but it does seem interesting and evident of something.  Something...

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.

Pros and Cons of a New Doctor

I'm seeing a new doctor tomorrow who specializes in orthopedic spine stuff.  It was supposed to be today, but we're having an arctic crisis over here and I had to reschedule.  Thank goodness he had an opening tomorrow because it took me a month to get in for the first appointment.

I have a love/hate relationship of going to a new doctor.  There is always the hope that he/she will be the missing puzzle piece.  They might have a solution or an idea on how to fix this mess.  Unfortunately going to a new doctor requires a summary of my story.  How do you summarize 13 years of pain and problems in 30 minutes or an hour if you're lucky?  I always take copies of scans, reports, and a summary of procedures, medications, and allergies.  I can usually tell if it's going to be a positive experience within the first few minutes.  Some doctors see my packet of information and their eyes tell me that they would like to turn and run out of the door.  I have an allergy list that is a full typed page and that scares many people.  Others look at as a welcomed challenge.  Hopefully tomorrow I may have some answers.

Did you ever see the episode of Seinfeld where Elaine tries to get a hold of her medical chart because the doctor constantly writes notes about her?  Kramer attempts to get a copy posing as a doctor.  He then ends up getting caught and both of them have more notes entered into their charts.  I hope that's not me.  I hope I don't have a chart floating between doctors.  A chart would be an understatement.  It's probably a book by now.  Seriously though, what do they write in there?

Pudendal Neuralgia: An Overview for the Non-Medical Community

Pudendal neuralgia is not a widely known condition, so I'm going to do my best to explain it to you here.  If you're googling your symptoms, just keep in mind that I'm not a doctor and this is in laymens terms.

The only way I can explain this simply is that you feel like your crotch is on fire – inside and out.  It’s like someone has poured acid all over you or you accidently sat on a cookie pan fresh out of the oven.  Why or how you would sit on cookie pan, I don’t know.  I’m not here to judge.  90% of my day is spent on fire.  Some days are worse than others with intensity varying, but I’m always on fire. 

Like I said before, it’s a touchy subject.  No one wants to talk about a burning vagina.  It’s certainly not dinner conversation and it’s not something you want to explain.  “I can’t come to work today because my vagina is on fire.”  “I can’t go to this restaurant because they have hard chairs and I don’t have a pillow.”  What?  See, it doesn’t work.  It’s weird.

I’ve had a history of back problems, so I was used to having back pain that would prevent me from doing things.  It was normal to say that my back was flared up and believe me, it was much less awkward.  There comes a point in time where you just say screw it and throw your modesty out the window.  Obviously, I don’t run around screaming my crotch is on fire – even though most days I’d like too.  It’s quite embarrassing and not something you want to tell your significant other, your family, or even your doctor.  Yes, at one point I was terrified to tell my doctor.  Clearly, I got over that quickly when I realized it wasn’t going away.  Surely they’ve heard of weirder things, so why shouldn’t I consult a physician?  Now if you’re unfamiliar with this predicament, you’re probably sitting there thinking, “eww she must have some sort of std or disease.”  Nope.  I’ve been tested – about a gazillion times if I might add.  It’s definitely a nerve issue.  It’s trapped or pinched or maybe just really angry.  My vertebrates are twisted in my lower spine, specifically L-5 and my sacrum, which is causing Sacroilliac dysfunction and pain shooting down my leg.  I also have ligamentous laxity, where my ligaments in the area are stretched out and not holding things in place.  In turn, my muscles have compensated and have tightened up on my right side to help hold everything together, crooked.  I think that being in this state for so long has impeded on the pudendal nerve, thus causing the fire below. Key Alicia Keys song “Girl on Fire” now.

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.