Alive, But Not Living

On the 24th, my hope of better living was dealt a huge blow.  I cannot get a prescription for oral Ketamine and my doctor doesn’t think the infusions will help the way I think and my insurance won’t pay for them, so no Ketamine infusions either.

And I am expected to be grateful for the 2 hydrocodone a day that I can take.  This puts me at the alive, but not living stage.  I’m supposed to remain active and have a fulfilling life, but I can’t get the tools to do so.  Because everyone has to be punished for the actions of a few.

And that is exactly what it feels like.  There are more homeless veteran’s in the US than there were opiate overdose deaths in 2015.  Why don’t we have a homeless Vet crisis that the news covers every freaking night?

In 2015, there were more deaths from influenza than opiate overdoses and those overdoses include prescription opiates and heroin.  Why don’t we have an influenza crisis?

We’ve all heard about the Opiate Crisis from somewhere and the tragedy of addiction and deaths and complications from opiates.  Let’s look at some realistic things:

Addiction is a disease and people don’t need opiates to become an addict.  My father, god bless him, is an alcoholic sober 33 years.  But he fucking got addicted to aspirin for several years while I was a teen.    And he isn’t the only one.  In 33 years, you meet a lot of people in the program and I have seen them addicted to a specific brand of water and I know it was an addiction because one of them once drove 100 miles to get a case of that particular brand.  Of WATER.  Addiction isn’t like Lupus, it’s like depression, it’s a mental disease more than a physical one.

And my best friend is proof that addiction is a disease.  She is incapable of it.  She can smoke, not smoke, drink soda, not drink soda, drink alcohol, not drink alcohol… all the things people complain causes addiction, she doesn’t get addicted to.  And there are different strengths of addictions.  After 19 1/2 years I was able to stop taking my Clonazepam cold turkey.  No withdraw, no side effects.  Nothing.  Just stopped.  No problem.  But I have a harder time quitting smoking, partly because I like to smoke, I like the taste and I like the smell of a lit cigarette.  Weird I know.  But I’m not as keen on the side effects of clonazepam or opiates.

I can’t go to the grocery store without wondering whether I’ll have enough medication to get me through the month.  The closest to understanding the pain of someone with CRPS that most will get is to stab yourself, leave the knife in, and try to go about your daily routine.  I was serious when I said my surgical incisions on day 2 after having my gallbladder removed was lower than my daily pain level.  But I was allowed to take 10mgs of Hydrocodone every 6 hours for that pain.  And I’m only allowed 2 a day for my hip, even though it hurts more.  Why?  Because CRPS and opiates hasn’t been studied.  And because I must suffer since 37,000 people overdosed on opiates in 2015.

Does that make sense?

Let’s apply this logic to the rest of life.  What if you weren’t allowed to buy Tide anymore because of the Tide Pod Challenge?  Would you as a Tide user feel this was fair?  Or rational?

Did you know the CDC does recommend using opiates for chronic pain?  Probably not.  But they do.  Even long term.  Even for those diseases they say they don’t work on long term like Lupus and arthritis.  The CDC says that taking them under the supervision of a physician is preferable to the increased expense and decreased quality of life of not using them.  You know who decided we shouldn’t use them?  Not doctors.  Not watch dogs of health like the National Institute of Health, not the Centers for Disease Control, politicians.

And to that end, they have repeatedly ignored recommendations of the CDC and NIH and made it harder for patients like me to get a prescription for anything that might help me and made sure the DEA (Drug Enforcement Agency) had the ability to shut down doctors they felt were misusing their prescription pads in the treatment of their patients.

That’s why I can’t get a prescription for 3 hydrocodone a day anymore.  If my doctor prescribes that, he can serve prison time… as well as lose his license.

Do you know why?  Because parents of teens that overdose or misuse prescriptions (usually stolen prescriptions) for opiates are sympathetic.  They look great on TV.  I feel bad for the woman in Pennsylvania who lost both sons to illicit opiate use at a graduation party in 2015.  I really do.  They mixed hydrocodone that had been stolen by another kid from an elderly grandparent with alcohol and both boys died.  It really is sad and tragic.

But I and my fellow chronic pain sufferers are being punished for it.  I don’t even live in the same state as the family this happened to.  Not even close.  But my doctor can go to prison for helping me attain some sort of quality of life because of tragic incidents like this.

I try to be very responsible with my medications.  When I leave the house, they leave with me.  When I have company over, even when it’s my niece and great nephew, the bottle goes into my pocket and stays until they leave.  Not because I have concerns about her stealing them or even any of my friends, but because that’s not a risk I feel I should take.

Yet no matter what I do to safe guard my opiate prescription, I am still being punished and held responsible for the actions of others that didn’t even involve my opiate prescription.

At this point, death is my best choice for treatment.  None of the alternative forms have helped; not nerve blocks, not steroid injections, not dietary changes (which are impossible since I’m allergic to most meat), and not the spinal stimulator  because I’m allergic to metal… And treatment isn’t one size fits all anyway.  I’ve talked to people ketamine hasn’t helped and talked to some it has helped greatly.  And I’ve talked to those who get epidurals monthly and those work great, but mine didn’t. But the two medications I have found that do help, I can’t get because we have a drug problem in this country and somehow I’m responsible.

But I am not supposed to get depressed or angry over my lack of ability to live my life.   I’m supposed to be grateful that I get 2 hydrocodone a day and smile and pretend I don’t want to die in my sleep when I go to bed at night.   I talked to 3 others recently who also have CRPS and feel the exact same way.  Sheri is getting Ketamine and while it helps a ton, it doesn’t cure it, god forbid she go grocery shopping, but since she is getting Ketamine she doesn’t feel like she can ask for anything to take on those days that she has to do stuff (like live) and the Ketamine isn’t enough.  Or Darlene who has a stimulator and has been taken off her opiate prescription, because you know Opiates are bad and we are in the middle of a crisis, but again, the stimulator keeps her from killing herself when she sits down and does nothing, but doesn’t keep up with her pain if she has to do something like go grocery shopping or god forbid have some kind of life.  I’d suggest the 3 of us meet up and commiserate, but not a single one of us is in a position to travel to get to a convenient meeting place and once there, we’d be in too much pain to do anything more than put our heads down and sob uncontrollably, which we can do in the comfort of our own house while Skyping.

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