#insanepain

(December 2016)

Do you remember when I was anorexic? Now I am a maniac-kleptic I steal junk food to chew and spit I collect cups into which I spit

Do you remember when I was healthy? Now I’m so sick no one can help me The pain’s so bad, it makes me cry I tried everything, I even tried to die

Thank you, Stanford Hospital I got fat but I will never get full Thank you, Lactulose medication You finally cured my constipation

Now I need a cure for Lactulose ‘Cause I’m sick to death of feeling gross Until they find a magic bullet for pain In this torture chamber I remain

Every night before I go to bed I curse myself for taking it off the shelf Every morning when I wake up I plot how to kill myself

They say mistakes aren’t made by God But Lactulose was a man-made job They say that “to err is human” I made an error that made me feel subhuman

They say everything happens for a reason I say when shit happens, find a reason for pleasin’ God gave me a message in the wild He said Lactulose is not his child

(December 2016) 

One night / last year I lost / my fear How hard / I fell Woke up / in hell

Let me / tell you I had / no clue I got / so schooled Like a / fat fool

Now I’m / in pain Life’s down / the drain Lost ev- / rything Thanks for / nothing

Now it’s / too late I sealed / my fate Took a / big hit Forfeit / for shit

Good times / are gone Still I / live on Since I / survived I may / change lives

If not / oh well I’m still / in hell I won’t / long last Hope to / die fast

(November 2016)

life no longer seems like a succession of days and nights

a rhythm of rituals and graces from god

that are accumulating into something special

building towards a better future

but rather like twenty-four hour cycles

of a lifelong marathon of misery and pain

in which the only thing to look forward to

(October 2016)

I'm sad

I'm sick

I'm shitty

I'm sick of this shit

I'm tired

I'm tortured

I'm triggered

I'm tricked

I'm bitchy

I'm broke

I'm broken

I'm broken-hearted

I'm crying

I'm closing down

I'm breaking down

I'm blocking out

I'm lost

I'm losing

I'm hiding

I'm hideous

I'm pretty on the outside

I'm ugly on the inside

I'm normal on the outside

I'm mutant on the inside

I'm miserable

I'm missing everything

I'm giving up

I'm not forgiving yet

I'm hurting

I'm hurtful

I'm hating

I'm hateful

I'm disabled

I'm disappointed

I'm disgusting

I'm disordered eating

I'm well-fed but

I'm hungry

I'm craving candy

I'm starving for sustenance

I'm artsy

I'm fartsy

I'm frustrated

I'm fibromyalgic

I'm tragicomic

I'm Lactuloosic

I'm losing

I'm loony

I'm locked up

I'm fucked up

I'm isolated

I'm violated

I’m hopeless

I’m helpless

I’m less than I was

I’m here nonetheless

I'm doing a drama

I'm putting on a play

I'm acting if

I'm smiling

I'm writing a note

I'm hanging a rope

I'm drinking 'til drunk

I'm hoping to choke

I'm dying to die

I'm sorry for trying

I'm sorry for lying

I'm sorry for failing

I'm sorry for scaring

I'm sorry for not caring

I'm sorry for being mean

I'm sorry for being me

I'm pushing through this pain

I'm transcending these troubles

I'm producing projects

I'm contributing creativity

I'm surviving this huge loss

I'm claiming this half-life

I'm hugging this hurt self

I'm climbing this hard hill

I'm hearing stories of struggle

I'm heart-aching for sweethearts

I'm supporting sad souls

I'm helping healers heal

I'm generating new ideas

I'm manifesting masterpieces

I'm making people laugh

I'm making people happy even if

I'm never happy

I’m never happy

I’m never happy

(May 2017)

I am one of the unlucky people who experienced a horrible reaction to a prescription medication called Lactulose, used for treatment of constipation and hepatic encephalopathy. Wikipedia explains its mechanism of action thusly: “Lactulose is not absorbed in the small intestine nor broken down by human enzymes, thus stays in the digestive bolus through most of its course, causing retention of water through osmosis leading to softer, easier to pass stool. It has a secondary laxative effect in the colon, where it is fermented by the gut flora, producing metabolites which have osmotic powers and peristalsis-stimulating effects (such as acetate), but also methane associated with flatulence.” (https://en.wikipedia.org/wiki/Lactulose)

 After taking the recommended dosage one evening in November 2015, I experienced incapacitating full-body pain throughout the night as the medication interacted with my system. The next day around noon when I finally felt like I could get up, I could no longer feel fullness or hunger in my belly, just perpetual cramping and a ton of gas pressure pushing down on my belly that has not gone away. I didn’t realize it at the time, but overnight my body had turned into a science fiction movie and my life had turned into a nightmare.

About a month after this incident I began to feel pain in my legs, particularly in my thighs. The pain level increased until it became excruciating, and that pain has also continued to this day with no sign of abating. I became unable to sleep except for maybe an hour a night because it’s hard to sleep when you feel like your legs are being sliced up by chainsaws while a multi-level traffic jam of spaceships drives through the interstellar highway of your digestive system. I have sought medical help from a wide spectrum of sources, both conventional and alternative, physical and psychological, but nothing and no one has been able to alter the physical agony or the emotional distress of being in constant incurable pain.

When I medicated with Lactulose, I very naively and foolishly did not consider that it might be dangerous. I assumed that because it was approved by the FDA that it was safer to use than herbs, and that because it was prescribed for daily use it was more acceptable than over-the-counter laxatives that are only intended for occasional use. Obviously, I was dead wrong! Months later I discovered that the bottle I had was expired at the time I used it, and then I found a website called FactMed.com that that displays side effects of pharmaceutical medications including Lactulose, as reported to both the FDA and directly to FactMed (http://www.factmed.com/dashboard.php?drug=%5B%22lactulose%22%5D). I realized that Lactulose was an unsafe and unsavory medication to use even when it was not expired. 

Publicized side effects mentioned by official Lactulose propaganda include abdominal bloating and cramps, vomiting and diarrhea (this is not actually a side effect, but the desired effect)--which should have been enough to deter me, had I done my research and really thought about how Lactulose worked on the body. But basic internet research does not reveal the more harrowing potential side effects of Lactulose, which are listed on FactMed.com. This extensive lists includes Cardiac Arrest, Multi-Organ Failure and Death! I NEVER would have taken Lactulose if I had known that it had been known to cause DEATH, let alone all the horrifying side effects that “lab rats” --who are actually human patients in the real world-- have had to LIVE WITH. In my case, the physical pain I contracted in my legs and digestive system feel like a fate worse than death. 

SOMEONE knew this medication was dangerous. The FDA knew. FactMed knew. Thousands of patients were hurt by Lactulose before I was hurt. Thousands of family members have had to provide care to loved ones whose health was negatively affected by taking Lactulose, just like my family has. Thousands of medical professionals have had to deal with health crises caused by a medication that continues to be prescribed by physicians, dispensed by pharmacies and covered by health insurance! How many more people will have to suffer the same tragic fates in the future?!

After my traumatic inciting incident, many health practitioners told me "Don’t use Lactulose,” or that it is a “horrible medication” and “very irritating to the intestines.” NO SHIT. But did ANY of these people who KNEW that Lactulose is an undesirable medication make ANY attempt to stop the production, distribution and usage of Lactulose, or at least to WARN people like myself BEFORE they got hurt (even something as simple as posting a review on a medical website)? Did the doctors, nurses and pharmacists who I THOUGHT were on my team know about the dangers of Lactulose when they recommended, prescribed it and dispensed it without any word of warning? WHO is making money off of selling a toxic substance disguised as a health aid? WHO are the Lactulosers and why are we getting hurt?

The constant physical torture that I have experienced since taking the Lactulose in November 2015 has taken over my personal existence, and caused negative changes in my external life as well. I am writing about The Lactulose Effect here because I think about it all the time, and I have a lot more to explore. I feel an obligation to do something to warn people about Lactulose, the dangers of prescription medicine and the facade of the FDA, as well as a desire to share my insights into the way that pain and depression affects human functioning (everything from my sexuality to my dreams have been affected). 

These are my objectives:

1. Lactulose is disapproved of by the FDA.

2. Or there is at least a warning label on the Lactulose bottles. 

3. And, doctors and pharmacists are required to warn patients of the dangerous known side effects as well as the intended side effects.

4. Lactulose is not distributed in giant bottles, because it seems to get more dangerous as it ages. (I was given THREE big bottles about the size of large bottles of soda, all at the same time--could I really have been expected to use those up before the Lactulose was potent enough to kill me?)

5. There is a class-action lawsuit against Lactulose as the Lactulosers rise up.

6. Even if none of these official goals happen, there is enough anti-Lactulose publicity that there is a greater public awareness of the dangers, which will hopefully spread by mouth as well as media. Physicians will be less likely to prescribe Lactulose, and if it is recommended, people will be more likely to reject it.

7. At the very least, regular people who hear my story will have a greater appreciation for being able to feel hunger and fullness, and the ability to exercise, eliminate and sleep naturally, and the privilege of not being in chronic pain.

Some people say everything happens for a reason. I don’t believe that I was meant to make this mistake in my life. I believe that it was a random accident in a dangerous world in which innocent people get hurt all the time in many different ways. Shit happens, and in this case it happened to me. But since it DID happen, I want to make some shit happen. I can use my voice. I can write essays and play ukulele songs and make art about this. I want this blog to become a book. I want to record an album of my songs about pain, sickness and death. I want to share my story on talk shows and in magazines. I would much prefer to have a more enjoyable story, but I am a walking warning sign and people should see this before they try Lactulose at home!

JOIN THE ANTI-LACTULOSE BOWEL MOVEMENT! It may be too late to save me, but it’s not too late to save the NEXT girl who goes to Stanford Hospital with fibromyalgia and an eating disorder (more about those specifics later). I’m not sure how to go about spreading the message or affecting legal change, but I know I have to do something. What can YOU do to help? 

PLEASE SHARE! What is your reaction to my story? What is your opinion of Lactulose specifically and pharmaceutical medications in general (especially if you are a medical professional)? Have you ever used Lactulose, and what was your experience? Have you or anyone you know been hurt by Lactulose or other pharmaceutical drugs? What are your ideas for creating change, dealing with physical and psychological pain, and raising awareness of chronic pain? What would you like to read more about in future posts? Please specify if it is okay to post what you write to me, or if you would prefer that I keep it confidential. Write to me at: 

[email protected]