Pain...what I went through this weekend was bullshit...and more random thoughts and rants.

I just do not know where to start, in writing this blog I hope to spread a little awareness. I have not written in a couple of years, in some ways I am in a different place than I was my last blog entry, in others I have not moved an inch. 

These past couple of years there has been an explosion in the reporting of opiate/heroin overdoses in the state I live in. It seems that every day there is a report of a heroin OD in rural America. We are burying our young over this epidemic and it IS scary. In fact, in my small section of Connecticut, you would be hard pressed to find someone who has not been affected by an opiate OD in one way or another. 


People with legit chronic pain and the physicians that take care of them are in the middle of this mess. I think it has been well established that the pharmaceutical companies marketed Oxycontin in a way that was both dangerous to patients and manipulative to the medical community. 

Doctors are on 'red alert' with anyone who mentions pain these days. patients are really suffering. 


Here is the thing; one of the most frustrating aspects of seeking treatment to any chronic pain syndrome is that it is a red flag to the physician if a patient is knowledgeable about pain medications. Addicts know what gets them high (that one that starts with a "d"...) and their manipulation knows no bounds. So I get it, but it is still unfair. 

It is extremely frustrating to dummy myself down when I go into my doctor to talk about pain management. I have taken several graduate level classes in psychopharmacology, all them about drugs of addiction AND I have been in chronic pain for no less than 10 years.

I know some shit but somehow my knowledge is suspect rather than helpful. If I suggest something....red alert, red alert. 

Enter 'pain contracts'.

 These days 'pain contracts' are pretty standard in the management of chronic pain, it is a list of things you must do if ones physician agrees to treat pain. This can include random urine tests, random pill counts where the office calls you and gives you a certain amount of time to bring your meds into the office so they can count them, just to make sure you are taking them correctly and not diverting the drugs.  If a patient refuses or breaks the contract they will be terminated from the practice without medications and put into painful withdrawals. 

I FULLY understand why these things are used, however, these are not contracts by any stretch of the imagination. My doctor can refuse or terminate treatment for any reason. ANY reason. 


The first time I had to sign a pain 'contract' was a few years back. I knew for a fact that this doctor did not have everyone sign these contracts.  It was like a punch in the gut when he pulled the piece of paper out, I thought we had a decent patient/doctor relationship. I was wrong. I pretended it didn't bother me.  It was absolutely humiliating. 

Meanwhile, a friend of mine was making $400.00 a month off of a prescription he prescribed, no contract with that patient. True fucking story. 

Something told this doc that I was a risk and quite frankly not worthy of his trust.. Meanwhile I  watched the doc be manipulated by someone who is a master at the game and one of the best liars I have ever met. 


This weekend I have been in one of the worst, for lack of better words, "pain flares", I have ever had. So much that I am running a fever, unable to sleep, blood pressure is through the roof, edema, sweating profusely and NOTHING relieved it. I woke up with my throat closing on me last night, I was lucky I woke up. Damn lucky I woke up. It was the first time in days I actually had sleep to wake up from. Yes, pain does that to me. 

I am far from functional. 

I have no options. Calling my docs office to gain permission to temporarily raise my dose or add something or ANYTHING, would be denied. In the two years I have been treated at that office,  I have called for out of control pain exactly; once. I was denied any extra treatment, but was told I was welcome to go to the ED if.....yeah,so I don't even bother. 


Calling for a sick visit regarding pain does not net you a same day appointment like it would if you had a fucking cold. I had to beg for an appointment and only got one because someone cancelled. This is not because my doctor is uncaring or unwilling, this is just how it is these days. February for the specialist. 

Meanwhile, I am losing money from lost wages...but you know, contract. 

I have a life, I have a career, I have a family I have goals, dreams and vacations to take. I am knowledgeable, I am trustworthy, smart and the only thing I have to gain from adequate treatment is my life back. Somehow none of that matters because in the end, my life is in the hands of people who do not trust me. 

I am not going through what I went through this week again, something has to give, someone needs to come up with something because this is bullshit. 



P.S.

The physicians that do treat my pain are kind, compassionate and professional..point is, trust goes both ways. Do no harm.

I am baaaaack. Sort of

Oh I found you!!!

yes, I lost my blog.

Actually, I stopped blogging for a couple of reasons; my adhd kicked in the same exact time my lap top broke and I have been working a lot. So, I stopped, then I forgot which email I had this under and all was lost for months.

A couple of weeks ago I got the urge to write again, but could not find my blog...tonight my search was successful.....

So yeah, I will be writing again. But not tonight-call this a warning. I have a lot to bitch about.


See Ya Real Soon and may the Force be with you.

The NOS Hysterical Female strikes again

I have come to determine that it is dangerous to go to the hospital while being a female.

Seriously....

The discrimination is almost laughable.

Let me explain;

I have been in the middle of a mastocytosis reactive state for a little over a week, hives, itchy, stomach pains, increase of pain EVERYWHERE, edema and all the other swell things a reaction brings, I decided that whatever I was doing at home was certainly not enough to get me off this train and decided to go to the ER for fluids and a stop to this mess. This is the order; saline, epi, benedryl, pain control, solumedrol and Atarax. Really when it comes down to it, in order to get me out of a bad reaction, this is what I need. It is in my records, there is no surprise.

Now the thing with these mast attacks is that they come with some pretty intense stomach pain, it isn't a gassy pain, it is pain from inflammation. Usually the steroid helps that right away.

The thing with masto people, is that we can not tolerate a lot of meds when we are in a flair, that is why there is a standing order of safe meds. 

Ofcourse, I get Dr. Cowboy who thinks he knows better. He pretty much refused everything I should have gotten. Decadron instead of solumedrol, (which I denied, politely explaining to the nurse I can not take that, it makes me crazy) the Dr initially refused saline as well...THIS is one of the most important of treatment. My mast cells have turned to soup and need to be rehydrated and simply drinking water is not going to work, It took me an hour of politely asking to be hydrated, 

This time, the stomach pains were a little different than they had been in the past, in fact the pain had been relentless for over a week, night-day-all the time. By the time I went to the hospital my pain was at defcom 6. Now, Dr. Cowboy did treat my pain, that is not the problem.....but what he also did was assumed my stomach and chest pain was the result of anxiety. He ended up snowing me with atavan and sent me on my way. 

Two days later I am BACK in the hospital with intense stomach and chest pain, after it never went away at all.

The Dr I got this time was awesome. I did not present with masto symptoms but with relentless stomach/chest pains that would not go away no matter what I did. So he did a full heart workup  (I was tachycardic)  and ordered an ultrasound. Now, because I have been experiencing stomach pain, my PCP doc had ordered a couple of tests of which I am waiting for the date to come around.  The ER doc saw that....he called that a clue. 

The results of my ultrasound was exactly what most of us thought; my gall bladder needs to be removed. 

No, my uterus was not floating causing me to be hysterical.....the pain was real.

Of course I have access to my medical records and it really pissed me off when I read what Dr Cowboy wrote...

normal mood/affect, alert, no motor deficits, oriented x 3

But yet

Patient was given Benadryl for mild pain epinephrine and Solu-Medrol.  Her skin lesions cleared she appeared much better.  But her anxiety 

persisted.  She was given some morphine for pain, but finally required some IV Ativan to terminate her symptoms.  I will give her a prescription for some Atarax 10 mg every 8 hours as needed for itching.  I also gave her a prescription for some Ativan

Also written on final diagnoses; Allergic reaction/Anxiety NOS (Not Otherwise Specified)

At NO point in time were my stomach symptoms terminated. At no point in time did I exhibit any outward signs of anxiety, in fact I was quite pleasant despite the fact Dr Cowboy refused the orders written in my chart, He also refused to take any blood work, I think the guy just wanted to knock me out..of course my symptoms terminated...I WAS IN A FUCKING COMA. 

The next visit two days later was a direct result of the discrimination the old Dr held. For us woman, our pain is very often contributed to anxiety, more poor medicine.  This is not something I am making up, there have been numerous studies to back up my anecdotal evidence and it really sucks. Thing is, female Dr's are really no better, in fact they are often worse. 

This also costs money, with two trips to the ER, that is a $300 copay that could have been $150, my insurance will now have to pay out double. Imagine how much money that could be saved on just this one thing alone....stop the damn discrimination and treat everyone-with and without a penis the same. 

Another thing I learned during the second visit is that I am now allergic to the dye used when doing a CT scan....while I did not initially present with a masto crisis, I ended up with one and you know what...the doc was awesome. Followed the written order to a T..made pretty quick work of it, 

While all the medical professionals I came into contact with were very respectful and performed their job well, we can not ignore that discrimination based on sex happens all the time in medicine, and it has to stop. In no way am I saying Dr Cowboy is a terrible physician, but he dropped the ball on my case and caused more pain that should have been caused. And now, with anxiety as an initial diagnoses; well, this will not be the last time I am not taken seriously. 

From this point, I am not sure how I am going to handle this, I feel that the powers that be at the hospital need to be aware of what happened, but I in no way want to be a blight on the physicians record, I just want the blight he put on mine taken off. He made a mistake and I will be damned if I am the one who is going to pay for it, think is is bad being female in the medical world? Try having a mental illness......

Bill Cosby and the court of public opinion

By now we have all seen the renewed interest in Bill Cosby and serial rape allegations, these allegations have been around since before I was born, this is not a new story.

Let me make this clear, I, 100% believe Cosby is a serial rapist, I, 100% believe these women to be victims of him. I have seen nothing to believe that any of the woman whom have come forward are in it for any secondary gain.

There is nothing to gain. Statute of limitations have run out on both criminal and civil court interventions, a few of the women came forward to the police directly after the rape and they were shunned by the police. He settled out of court with a couple of other women years ago.  Tell me exactly what type of "fame" do assault victims receive....
 
The way these women have been vilified by keyboard snipers is representative to how sex assault victims are treated every day by the court system and by society, these ladies are intelligent, successful and fully realize they will be treated terribly by the public but chose to come forward anyway.

The only thing "gained" is that the public now know their stories.



Many people believe that we should "wait until the courts take care of him" and "we have no right to judge/condemn Bill Cosby, we weren't there".

Ok, see...here is where those sentiments are dead wrong.

I have every right to condemn him, 15+ women have come forward through the years, they all have a similar story describing an exact MO. The police and courts had their chance, they blew it.

Now it is the public's turn to tell him what he did was horrendous.
Where the judicial system failed miserably, society is screaming loud and clear...WE AREN'T GOING TO ACCEPT THIS ANYMORE.

We, as a society have every right to shun those who have hurt their fellow man, I have no need to wait until a judge or jury tells me how I should feel or a higher power for that matter. Natural consequences of being a rapist is that you are looked down on by the majority of society.

Don't like it? Don't rape.

News flash; Dr Huxtable was NEVER a real person, he was a character on a sitcom played by an actor. Some people are having a tough time separating the character from Cosby.

 Please do not try and tell me that this is "fishy" or that this is some conspiracy against Cosby....there is nothing logical about that thinking at all. How anyone can paint Cosby to be a victim is astounding, but there are some who are doing exactly that.

Cosby is nothing but a pathetic old man who enjoyed forcing himself on naive drugged up woman. He is a serial rapist and I am 100% comfortable stating that, he knowingly preyed on young girls who society is programmed to judge...much like the cop who was raping prostitutes, a sociopath knows their prey.

Maybe society is getting somewhere, we are holding him accountable, engagements have been canceled, his new sitcom idea has been shelved and he has become poison to ratings. In fact, I am pretty sure his comeuppance is exactly right for him, even if he was charged and found guilty way back when, he would not have spent much time (if any) in prison......

Call it karma if you will....I'll call it justice.

Death in the family....Todd

Sad news this evening. I found out that a cousin of mine, died from a heart attack last night.

He was 43.

Way too young.

Todd and I were pretty close growing up, he had the best curly black hair  and a heart of gold. Every summer, my dad would take us to an amusement park, I always chose Todd to come with me. We had such a great time.


Todd was always, shall I say ....mischievous.

He offered me my first beer my first cigarette  and my first joint. It truly seems like yesterday that we would do his paper route together on Lovers Lane in East Lyme, we would sneak  cigarettes behind the bushes.
 We laughed a lot, we were pulled over in our little town by the local police a couple of times. Always with a case of beer "hidden" under the seat... that case of beer was dumped out on the side of the road while the officer kindly threatened to tell my dad, We never did get a ticket.

I don't think my dad found out


 Todd and I spent a great deal of time exploring the woods when we were younger.  He had a great man made pond way way in the woods of his property, we would collect tadpoles and watch them hatch. On one of our outings while at my grandmothers, we found an old burial ground deep in the woods in East Lyme. Proud to say I grew up hanging out in the woods and that Todd was my fearless partner.

We had some great adventures.

From what I have gathered through the years, he never really lost that mischievous  quality.

 

We had lost touch but I would run into him now and again, and always that heart of gold would be right there on the surface. Always a huge smile.  

A tough reminder that tomorrow is never guaranteed

He truly was a great kid to grow up with and I will always look back at those years with a great love in my heart,

Todd- you will be missed

Stupid Statements from Medical Professionals Regarding Pain or..How I Fired My Dr

I coughed a couple of times last night, what followed was a sound that I can only describe as what you hear when you have squeezed a bunch of bubble wrap.

Then the wall of pain came

Add the fact that my body is in a state of inflammation hell and I am now at defcon 5 on the Erin Pain Scale.


I accepted years ago that I would be in pain for the rest of my life, because of that acceptance, I have been able to put some pretty great tools in my pain busting tool box. Music therapy is a powerful tool that I use daily. I know that when I am practicing my vocals, I feel no pain. None.

However, breaking out in song in the middle of the grocery store in response to a muscle spasm is pretty impractical.

Breathing exercises and meditation are also things I use on a daily basis, I have gotten really good at the whole meditation thing....I learned long ago that if your face is all scrunched and full of tension, so is the rest of your body and that causes more pain.

My face will never tell you the pain truth.....this brings me to my point of this blog. Kinda.....

Dumb shit medical professionals say when you're a chronic pain patient;

1. Well, you don't LOOK like you're in pain

This one makes me want to choke the shit out of someone...preferably the one who said it. These words are usually spoken by a young nurse who just graduated from school. Bless their souls, they will learn...probably after they have blown their own disc-bad backs and nurses go hand in hand. These young padawans have little to no clue about chronic pain-sometimes they are already jaded due to the antics of the regular slew of drug addicts wanting "that medication that starts with D"-hopefully they will someday learn that acting as judge and jury in the ER is not their job. Denying pain relief based on the actions of others is not only bad medicine, but harmful to the millions of people who live in chronic pain.

Besides, you will never be able to tell by looking at and chronic pain suffer their pain levels by looking at their facial expressions. We have an uncanny ability to hide our pain, I am talking academy award winning ability. What I suffer from every day, no one cares about, I still have to go on with my life, having a pained look on my face all the time will not help me at all.

2. Have you tried Tylenol or Motrin?

This is the dumbest of the dumb. No, seriously.....effing stupid. This should be filed under; "Take this persons medical credentials away please....".

3. Here is some Toradol.....

Ah....Toradol. According to some medical professionals this is the miracle drug of miracle drugs. I mean, kidney stones, back pain, tooth pain...it also promotes world peace AND if put in your  gas tank your gallon of gas will stretch to 100 mpg

Uh....it is pretty much Tylenol on steroids and your Dr is stupid.

4. Have you tried Yoga..

  Why yes, watch me take my leg and put it around my neck while I am in extreme pain. Ok, I have to give this to the medical field, stretching is the bomb, it really does help. However, like everything else, it has its limitations and is certainly not a cure all. People in chronic pain have different pain levels that shift sometimes on an hourly basis....yoga can not be effectively practiced at Defcon 5.

5. Have you thought about going to a pain psychologist...

Oh, sure...I'll go but only to teach him the numerous methods I use daily in order to combat pain without having to take meds, the person you want to send me to is not only a douchebag but a douchebag who does not suffer from chronic pain. That, and....Harvard. So...fuck you

6. On a scale of 1-10, what number is your pain

See, this one is tricky. I have pain zones....
Zone 1; neck up
Zone 2; Neck to hips
Zone 3. hips down

Zone 1 is hovering around 5-which is my baseline; zone 2 is circling an 8.5 and zone 3 is around 8. You do the math, if you want to average it, by all means....

7. We don't give effective pain medication for ______________ here

 Why do you call yourself a Doctor? No seriously, why would you parade yourself around as a healer when you refuse to treat a verifiable medical condition that has been proven to shorten lives, raise blood pressure, insure depression/anxiety, promotes joblessness/divorce/isolation/anger/PTSD/suicide......

No, seriously get the fuck out of the medical field...you do not belong. You are a danger to the public.

8. You need to lose weight

"SHIT MAN....I HAVEN'T LOOKED IN THE MIRROR LATELY. Thanks for the wakeup call....but I have to tell you, when I was 20lbs lighter, I felt the same pain, Dr. Richard Cranium"

9. Have you tried epidural steroid injections

"well Dr Dick, I am still trying to work off the 20 lbs I gained from turning into pac-man after the last set of ESI injections....oh, and the $1500 copay, it just is not worth the very little (to no) pain relief I felt from the last ones. In fact, I gained more pain relief from the pain meds you prescribed for the procedure...(that is what us patients call a "clue")"

10. We don't treat pain with pain medications here..the FDA/DEA will not allow it

Ok, I am sorry, I thought this was "The Pain Clinic
And you are lying your face off with the FDA/DEA thing. Here let's give them a call, i'll use speakerphone so your ass is owned when I call you out as a liar who is lying out of your lying lie hole. That..and...my training taught me to RESEARCH EVERYTHING"

I really could go on and on with this.....

It is well established in academia that 3% of chronic pain patients actually become addicted to opiate medications...google it. These are well replicated studies, sound studies. Now, I know there is an opiate drug problem out there, I have treated addicts myself....I know their tricks. However, refusing treatment based on the actions of a small percentage of people is poor medicine.

Refusing to treat chronic pain has caused some people to manage their own pain by going to the streets. Funny, how the very people trying to curb abuse are promoting it by turning people away, society thanks you for creating a steady stream of supply and demand so do the drug dealers who are making money off the medical fields stupidity.


You run a higher risk of suffering from addiction if you are a nurse, anesthesiologist or a lawyer.
Google it, then check out your state's regulatory action board...look at the 100's of nurses whose licenses are in limbo due to narcotic misuse. Oh, and a lot of what is on the streets...is coming from hospital and pharmacy diversion.....NOT LEGIT CHRONIC PAIN PATIENTS.

Ok, I am done ranting on this (for now)

I have a lot of friends who suffer from chronic pain conditions, every single one of them have tales of horror to tell about their pain management journeys, I have heard some stupid shit out of the mouths of people who are supposed to be smart...but all in all, I have been lucky, my pain can be managed at least to the point where I will allow it.  I have only had a couple of run ins with poor treatment of which I swiftly took care of, I am no longer passive when it comes to my medical care. So many of my chronic pain people have not been so lucky.

Today is the kind of day chronic pain people detest, the pain is bad enough where a normal person would fly to nearest ER for relief/diagnoses. This is the kind of day where it is raining, everything is swollen and getting out of bed is not really a viable option.

My superbowl Tuesday

I took my 16 year old daughter to the polls yesterday. we shall call her Minnie-me. Personally, I think that Election Day should be a national holiday, it was really nice seeing a lot of parents with kids in tow as they were filling out their ballots, our district cancels school for election day. 

Minnie-me holds pretty much the same political views as I do, my son is a budding republican-conspiracy theory guy..so don't think I brainwashed my kids into having the same views as I hold. While the oldest holds a lot of the same human rights beliefs as I do, he seems to have a different view as to how the government should work. I respect that. 

One thing I have told both of them repeatedly is to participate in the democratic process. 

Part of that process is protesting. Stand up for something. March on Washington at least once in your life. Question your government as well as authority whose power has gotten out of control.

Protest peacefully 

Every time I vote, I, respectfully refuse to show ID, it is my way of protesting what I feel is a poll tax. In my state, the law is; the only time a voter needs to show ID is the first time they register/vote. I want to know if the poll workers know that and respect it, no I do not give the poll volunteers a hard time, I tell them I forgot it and go from there.  

I have never had a problem. I obviously do not live in Texas. 

A big race in our state was the race for Governor, I did not like either choice. I protested by doing a write in on my ballot. I was unsure what I was going to do until the moment I started filling out the ballot....

I wrote in my cat

                                                                     This is Khan

                                                              This is Khan in a bag

                                                        This is Khan in another bag

                                                             This is Khan in a pot

                                                  Khan in a pot is about as useful as the

                                                  highway to nowhere our governor built.

Anyways

Not only did I vote for my cat, I Star Trekked my ballot. 

I wrote on the bottom, where the write-in square was located;

KHAAAAAAAAAAAAAAAAAAAAAAAAN

That was my peaceful protest.

It actually may have rendered my ballot uncounted, but that really doesn't matter today, no one lost or won by one vote. 

Around 8pm, I hunkered down with the political talk shows

There was a lot of swearing at the TV last night. My team lost.

The writing is on the wall and our state....and country, now has to live with the decisions that were made yesterday. 

There was a lot of swearing at the TV last night. 

But, I stood for something, even if I came off as the crazy cat lady who loves to reference Star Trek.