Hospital

I had a migraine tonight that I couldn't get rid of so I went to the hospital.  I wasn't discharged until almost 2am and now I can't sleep.... and I have to work in the morning.  And I know for a fact that lack of sleep is a trigger for my migraines.  It's like a vicious cycle.

Here's what I was given at the ER (the combination was pretty effective)...

1. Norflex through IV
2. Zofran through IV
3. Tramadol pill (taken orally)
4. Percocet 10 (taken orally) 

It was a pretty good little combination.  But it's left me WIDE awake :/  Annoying.  Really fucking annoying.

The good news is, however, that I think I am teaching these ER staff members that these migraines are real and there are people like me who genuinely suffer on a regular basis with very little relief.  But other than the migraines, things have been going well-ish.

Lately there have been some issues with my heart.  I've been experiencing tachycardia (rapid heartbeat), inflammation of the heart, chest pain, and abnormal EKG's.  I don't know what all of this means, but I do have an appointment with a cardiologist at the end of this month to run some tests.  But in my heart, I really don't feel like it's anything serious.  I actually think it's just anxiety.

I was going to cancel the appointment because I truly believe that it's nothing, but my husband wants me to go just to make sure that there isn't anything wrong... so I'll go.

It's just crazy because it truly is one thing after another.  It's so hard to even believe.  And if I'm having a hard time believing it, I'm sure others around me think I'm just plain nuts.  It's crazy.

Anyway, I'm going to peace out because I'm hungry.  So... until next time...

Peace Out, Homies!

Sphincter of Oddi is small but mighty!

So my Sphincter of Oddi Dysfunction is back in full swing.  After 8 months of pain pills, pain patches, and testing, we finally found a nerve block that made the pain and nausea disappear within seconds.

Well..... sadly, after 4 good months, the nerve block has worn off.  So I'm back to vomiting daily and being in such severe pain that I end up in the ER.  But because my "former" Primary Care Doc has the ER on notice, I technically was not supposed to receive any narcotics.  And I'm sorry, but that shit is PAINFUL.  There is no way to even relax for a second without narcotics, it's just the way it is.

Thankfully, there was a new doc and a new nurse who weren't familiar with all of the rules that my "former" PCP has for me.  So I was able to get some Dilauded in the ER and then a small script for Norco 5's to get me through the next day until I can get to a new Primary Care Doc.

And look, it's not that I want and desire the effects of narcotics.  In fact, my tolerance is so high that I no longer get that euphoric feeling from them anyway... but for those of us who are in chronic pain, there's just no way around it without sacrificing our quality of life.

I remember when my "Former" PCP would ask me how I was doing.... how I was feeling.  He would ask if I was comfortable enough while we waited to get in to see the specialists.

Now our conversations are VERY different.  Every time I go to the ER, he has his nurse call me the next morning to express his disappointment.  Even if I didn't get any narcotics, he accuses me of getting some and gets pissed off that the world doesn't listen to every word he says.  I want the guy back who cares how I feel while I'm waiting for reinforcements.

Just the other day, when I told him that my Nerve Block had worn off, he said, "Well, it's going to be a month before you can get into the doctor I want you to see.  So you'll just have to hang on until then."

What the hell does that mean?  I'll have to go to the ER every night for the next month because he won't give me any decent medication to help me survive the next month?

I understand that there are "rules" and that doctors are under more scrutiny than ever, but I HIGHLY doubt that he'd get into any kind of trouble for providing and controlling the amount of narcotics given to someone who actually needs them.

I can't wait for tomorrow, I have been given referrals from friends on new doctors that they really believe in and really feel that they would be good fits for me... and I know they're accepting new clients, so it's just a matter of getting an appointment.  Then I NEVER have to see Dr. Crap ever again.

This is really the last thing I need.  Stress increases the SOD pain as well as triggers my migraines which is a whole post for another day.

Time for a New Doctor

I don't want to seem ungrateful.  My PCP has been by my side helping me navigate all of these crazy illnesses that I keep coming up with.  But I think for now, it's best if we just part ways.  He's gone from wanting to make sure I'm comfortable and living a good quality of life to caring only about what meds I use.

I had a severe stomach issue the other day (likely a Spincter of Oddi) flare up and I knew that if my nerve block wore off, our plan was to get me back in to the specialist ASAP to get a new nerve block.
So I went to the ER for emergency pain relief (which they refused to give me anyway) and then the next morning I got a call from my PCP's office.

The nurse that called was clearly trying to relay that my PCP was pissed.  He was ONLY concerned about whether or not the ER had given me narcotics (which I DON'T have a problem with, by the way).  She kept telling me how disappointed he was... blah, blah, blah.

They also made it clear that I wasn't going to be able to see the specialist for at least a month.  So for me, that means a LOT of vomiting and SEVERE pain until I can get my new nerve block.

But not once, NOT ONCE, did the nurse state that he wanted to know how I was doing, if I was okay, or if I needed something to make life livable until I can get back in to the specialist.

His ONLY concern was whether or not the ER disobeyed his wishes and gave me narcotics.  And even AFTER I told her that all they gave me was Benedryl (whoop ti do!) and no narcotics, she kept driving the point home as if I was some petulant child being scolded.

So that's it.  Our relationship has run it's course.  He's no longer focused on my level of care and more focused on the bureaucratic ways of working within an office group.

So I bet I REALLY pissed him off last night when I went back to the ER again and got Dilaudid.    But the truth was, yesterday I was feeling worse.  More vomiting (which yes, I do have zofran & phenergan for) and sever pain (of which I have a total of zero pain killers) and I actually for the first time in my life passed out cold.

I remember getting up from a lovely vomiting session on the toilet and I remember feeling week.... and the next memory I have after that is hearing my husband tell me that he was taking me back to the ER.  Not only did I pass out cold, I apparently hit my head on the boxspring of our bed on the way down.

So if my PCP wants to be pissed that I sought treatment for that.... well FUCK him!  Next week, I am going to officially start looking for a new PCP.  It's not a matter of payment because my insurance is paying 100% of everything right now... he's just flat out refusing to allow me to be comfortable and live some sort of normal life while I wait to get into the pain specialist.

I'm so angry.

Am I Invisible?

My pain is invisible.  Some question whether or not it's really there.  Some say that I look sick when I'm feeling fine and other say I look great when I feel like I'm at deaths door.

Unfortunately, Suicide is not an option.  I made an attempt one and lived to see the devastating impact on my family.  I could never do that again.  But the less and less that doctors help me, the more and more that urge grows inside of me.

I want to be normal, happy, healthy.... but that's just not me.  And the crazy thing is, as many of us are out there, you'd think the doctors would have figured out how to deal with us by now.

As if on Queue....

I went to the ER last night with severe stomach pain.  Partly because it felt like Pancreatitis and partly becuase frankly, no one should have to deal with that level of pain.

Of course, becuase they've been tainted by Dr. NotHelpful, they provided me with no narcotics.  Zero.  As soon as they found out that my pancreatic & liver enzymes were normal, I was pushed out the door without feeling a stitch better.

And like clockwork, Dr. NotHelpful called me this morning to express his extreme disappointment in my decision to go to the ER.  But what the hell else am I supposed to do?

Does anyone else out there have a Dr. NotHelpful?

Beauty and the Pain Killer Beast

All of you who've suffered chronic pain probably already know what I'm about to say.

In the beginning, my doctor was supportive and would give me pain meds to get by day by day.  When I'd run out, I quickly found that my body was dependent, but my mind wasn't.

Fast forward now to two years later... I have zero pain meds and my pain gets so bad that I end up in the ER about 3-4 times per week.

Per my doctor's request, one ER will not give me ANY pain medicine no matter what.  So like if I broke my let, I'd be up shit creek.

The other local ER has had about enough of me and no longer wants to give me in pain meds.

To make it all worse, each time I go to an ER, they immediately report that to my doctor who calls me first thing in the morning to berate me and remind me that I'm not supposed to taking pain meds from anybody.

Too bad I live in a small town, otherwise I just switch PCP's.

I'm just damned if I do and damned if I don't.

Over the course of the past few years, I've had:

Hydrocodone 5
Hydrocodone 10
Percocet 5
Percocet 10
Fentnyl pain patch

I'm not suicidal at this time, but the last time I was, it was because I was in so much pain on a continuous basis without any real help.  I'm getting to that dark place again.

Indroduction: Like we need one

I'm not even sure where to begin.  If you're reading this, you fit into one of two categories.

1. You yourself are a chronic patient
2. You are trying to understand a chronic patient

I will do my best to address both of these issues.  But for now, I'll introduce myself and give you my history.

It all started with migraines when I was 12.  I would get them like clockwork about a week before my period.  These were NOT headaches, they were Migraines.  BIG Difference.

Then, at about 22, I started developing painful ovarian cysts that would sometime ruputre.  This was VERY painful and sometimes scary.... like the time they told me that I need life saving surgery but I was 22 and in a new town at the ER all by myself.  Who was I supposed to make that decision?  I didn't even have insurance!

They cysts, the period problems (sometimes 2 in a month, my longest period lasted 48 days!) and the migraines continued.... and got worse.  That in itself was a complete nightmare for my physician.  He didn't know what to do with me other than try to tell me it was all in my head.

Then one night, I developed severe abdominal pain and vomiting.  I went to the ER only to find that I had appendicitis and needed to have it removed immediately.  OK.

Then I developed back problems.  I never did figure out what was causing them.  But I was on pain meds every day for 2 years trying to get that under control.  Eventually, my OBGYN and I decided that a full hystorectomy may solve many of my problems.... including the back pain which they thought could be endometriosis.  During the hystorectomy, they found that was not the case.  But my back pain healed anyway (probably just from the bad period pains) and I started feeling better for about 2 weeks.

Then nausea set in combined with excusiating pain.  I spent a LOT of time at the ER trying to get some relief.  Finally, they decided that I had Gall Stones and MUST have my Gallbladder out immediately.  So the next day, I went in and had my Gallbladder removed (while I was still healing from the hysterectomy).

After my GallBallder came out, I felt great for about a week.  Then the stomach pain and nausea really kicked into high gear.  I was in and out of the ER so much that they new my first & last names along with my D.O.B. without having to ask.

That was FINALLY diagnosed as Sphincter of Oddi (SOD) disorder which sometimes occurs when you're had your gall bladder removed.  BUT!  Even with that diagnosis, the pain and nausea continued to land me in the ER several times per week.  And one day they said, "We're admitting you, you have pancreatitis".  Well great.

Not too long after that, they decided to do an ERCP and Sphincterotomy to cut open my sphincter since it wasn't opening as it should and was causing gastro perisis and pancreatitis.

When all of this FINALLY got solved.... it all took YEARS.  They migranes came back in full force.  I even went to the Diamond Headache Clinic in Chicago where they admit you until they can figure out what medicines work best for your migranes.  I was satisfied when I left, but that satisfaction was short lived.

And then, almost like clockwork, the stomach pain and nausea returned.

Ah.... the life of a chronic pain sufferer.

Share your history down below, I'd love to use this blog to connect with others like me.