Wednesday, October 5, 2016

A Patient's Nightmare

The worst part about nightmares is when you realize they are real. Not some bad dream from which you’ll wake, sweating and with racing pulse. But very real, in-the-moment dread, terror and raw anxiety.

One of my nightmares is not having support from the medical community when I need it most because I choose to use a non-toxic plant to treat my health problems. Though more and more individual medical practitioners are tolerant, even accepting of patients using medical cannabis in PA, the support offered by medical groups and the medical establishment, in general, is still very limited. Whether this limited support is motivated by organizational politics, unfounded fears, or ignorance, I believe much of it can be traced back to the inadequate and often unjust laws and policies established at the state and federal governmental levels. That needs to change.

It was recently confirmed for me that for someone who is illegally treating themselves with cannabis, there are cracks in the system which can swallow you up. Act 16, the law which authorizes a medical cannabis program in PA, was certainly a step in the right direction, but the program is far from operational and offers no real patient protections at this point for adults.

Act 16 does allows for a safe harbor provision for caregivers of minors to obtain and administer medical cannabis provided they comply with the various restrictions in the law. It is far from a comprehensive protection, but it does validate the legitimacy of the patient’s need for medical cannabis. The provision doesn’t seem to be a very a complicated program to administer, and all that the patient’s physician is doing is verifying that the patient is being treated for one of the 17 authorized serious medical conditions. This opportunity for protection should be offered to all patients. It would certainly not fix all of the problems patients face, but it could help to legitimize cannabis patients in the eyes of the medical community.

For those who are suffering, dying, or otherwise feel they can no longer wait for the system to catch up, they are left with a dilemma; do I continue to suffer while I wait for the system to accommodate me, or do I break the law and take care of myself? There is a lot to consider and it’s not always an easy choice.

The decision to switch from a pharmaceutical based treatment program for chronic pain to a cannabis based program was not an easy one. I came to this decision because I was tired of the continued damage being done to my body from the decades of pharmaceutical use and the concern that these drugs would kill me, either slowly from the ongoing damage they inflict or quickly via toxic overdose. To make such a switch I had to consider the legal ramifications to myself and my family, financial costs, and how well I could manage my chronic pain condition. I also had to consider how to make my illegal approach work within the medical community where it is frequently still seen as suspect, because like it or not I still have to interact with them on occasion.

Working around my pain doc’s schedule of drug testing while weaning off of the pharma meds and onto the cannabis treatment was a real trick and would take another blog to explain. But certain other medical situations would be out of my control, like an accident or sudden illness requiring short or long term treatment by unknown medical staff. How do I deal with those situations where I’m stuck in a controlled medical environment over which I have little control? I could always refuse medical advice and walk out, but how do you do that when your body is broken and you’re at the mercy of someone else for care, and that someone doesn’t know you or how you came to use cannabis to essentially save your life.

I had a health problem occur a few weeks ago. I knew it wasn’t good and I didn’t want to mess around with it, so in short order I went to my primary care doc, then a surgeon and then off to surgery a week later to repair the issue. When discussing my medical history and pain control plan with the surgeon I told him about my cannabis use and that my primary concern was that I would have as much or more back pain than post-op pain. He agreed with my assessment and we discussed some details of how to manage things. Apparently we were not fully communicating, or someone in his office didn’t get the memo, but my idea of what I expected from him was not the same as what happened. He did suggest that I “don’t overdo it with the cannabis” when treating the post-op pain in combination with the pharma drugs. He said this as he was leaving and I almost didn’t catch it but afterwards I was thinking “WTF” – you want to warn me about not overdoing it with cannabis but give NO warning about not overdoing it with the narcotic that you’ll be prescribing!!

The surgery went well and I actually had NO back pain in post-op or for the ride home. I had “front” pain around the surgery site, but the absence of back pain was almost magical. At best, I always have at least some mild stiffness and soreness in my back, so this was a real treat. I assumed the relief was from the anesthesia drugs still in my system and that at some point it would wear off. It did.

The next day my back starting aching and then as if a switch was flipped, it progressed quickly into extreme flair-up mode. Although I always have varying degrees, intensities and frequencies of back pain throughout the day, every day, I don’t get too many extreme flair-ups. Don’t get me wrong, I’ve had more than my share over the years and they leave me in a condition where I can just about function to take care of my basic needs and can last from several days to several months or longer before it settles back down to where I’m at my baseline. 

My pain that day shot up to a solid (7) on the pain scale (1-10) and was continuing to intensify. For perspective, at (8) I’m in total despair, sobbing uncontrollably and dialing 911 because I can no longer deal with it. At (9) I’m screaming uncontrollably, totally paralyzed by the pain and want to die. At (10) the screaming stops because I’m horse or passed out. I’ve only reached (10) maybe two times and wish to never visit there again.
Dialing 911 is a two edged sword. The hospital staff can offer me pain drugs and monitoring that can’t be done at home, but the additional trauma from the transport to the hospital and handling from gurney to exam table, and the stress of the situation cause an increase in pain which makes a horrible situation worse! And now do I even mention that I use cannabis for pain, lest they think I’m drug-seeking and withhold pain meds. It’s been my experience (prior to being on cannabis treatment) that screaming patients brought in by ambulance get attention and are usually accommodated with successive and multiple shots of Demerol and morphine in the thighs until things become more manageable. Although I’ve done it five or so times, a trip to the hospital to manage pain is a traumatic experience and one that I desperately try to avoid.

The lowest, most frightening point in my life occurred when I went to the hospital for pain control. That time I waited too long to call the ambulance and was hitting a solid (9) when I got to the emergency room. Standard protocol for my complaint was to get an x-ray of my back to make sure the pain wasn’t caused by a fracture or something, which of course it wasn’t, but I was beyond speaking and couldn’t tell them that. The transfer onto the cold metal table for the x-ray put me right into the worst pain of my life. I’m not sure but I believe I was in and out of consciousness, screaming without any noise (since I was horse) and just a total blubbering, slobbering mess. By that point the staff apparently realized that it was pointless to try to get the x-ray, so they left the room without a word. Every one of them. They left me alone, totally helpless, at the absolute worst point in my life. It was the most heartless thing I’ve ever experienced. I thought I caught a glimpse of one of the nurses crying as she left. Maybe they couldn’t stand being around me. I would have left if I could.
That was back in the mid 90’s. Flashbacks of that moment run through my mind whenever I think about having to make the call to 911. Call too early and I might miss the chance to tough it out at home and avoid the entire hospital scenario, or call too late and relive the worst experience in my life.

I do what I can at home to avoid a hospital trip. It involves using various narcotics and other pain meds (now including cannabis – this was the first time I had to deal with this since going onto cannabis treatment) and applying heat to my lower back to divert the sensation of pain. A few times I’ve caused blistering burns when using a hot rag or heating pad for this purpose. It sounds extreme, and it is, but if it keeps me from that trip to the hospital so be it. I’ve explained this to doctors who have seen the burns but I truly don’t think they get it.
For the most part my transition to a cannabis based treatment protocol has been successful. Using cannabis oil for routine chronic pain control and for break-thru pain has worked about as well as the pharma drugs. I was able to wean off of all five of the pharma pain meds plus my bp med. However, I have yet to understand how best to use cannabis for severe acute pain. Cannabis helps, but I still had to resort to narcotics and other pharma meds for the flair-up. That being the case, I need to involve the medical community at some level. It’s not that I’m opposed to working with medical staff – in fact I prefer it, but the medical establishment has a long way to go to appreciate and effectively work with medical cannabis patients.

When I got the flair-up the day after surgery I thought I could count on my surgeon’s office for advice and guidance on what to take to settle things down. I was wrong. The staff person that my wife talked to said that they are only concerned with pain from the surgery. I would have to contact another doc who dealt with spine issues or pain management for the back pain. That was a bit of a problem. I no longer see a specialist for my back because I was told time and again that there is nothing they can do for me, so I stopped seeing the various specialists over the years. And the relationship with my pain management doc has evolved into a strange one of “don’t ask, don’t tell”.

After weaning off all of my pharma pain meds and repeatedly talking about the medical value of cannabis, it became clear to my pain doc that I was using cannabis for my chronic pain issues. Neither of us actually uttered the words that would confirm my cannabis use, though, out of concern that he would be compelled by his medical group policy to release me from his care for admitting that I was using a Schedule 1 substance. The doc seemed genuinely interested in my success and tried to be as supportive as possible, but laws and policies prevent him from fully supporting my use at this time. Since I stopped using the pharma meds and he no longer prescribes them for me, he’s not in a position to advise me on how to use them alone or with cannabis. It’s a weird situation, but it actually could be worse.

When devising my plan to go onto cannabis treatment I considered what I would do if I was released from care by my pain doc. I searched for a cannabis compassionate pain doc but could not find one in my area, so it’s good that my doc didn’t release me. But his ability to treat me is in limbo until the PA medical cannabis program is functional. Ideally I’d like to have a relationship where he could prescribe narcotics and other pain meds for me as needed for acute pain in conjunction with recommending medical cannabis for the ongoing chronic pain. So for now I’m mostly on my own, except for the love and support of others throughout the cannabis patient communities.

It was fortunate for this flair-up that I kept some of the previously prescribed pharma pain meds. My concern though was how I would react to them since I hadn’t been taking them for a year and I didn’t have the tolerance that I previously had. I know I couldn’t just restart those meds at the dosages I reached after years of use. This is where it would have been nice to consult with medical staff familiar with my medical history on how to use the various meds for an acute episode without overdosing. It turned out that I was able to use enough of the drugs in the right combination to get me through the worst part of the episode without causing respiratory arrest. Not that it seemed close. I purposely erred on the side of a lower than adequate dosage - essentially denying myself proper pain control to make sure I didn’t overdo it.

I know I am not alone in having to make these life and death decision without proper guidance by the medical community because of my medical cannabis use. It is simply wrong and it’s time that laws, regulations and policies address this. Without question, patient care needs to be the primary concern. Pennsylvania now officially recognizes that cannabis has medical value and that it could benefit many patients across the state. Protections from outdated laws and policies need to be established for those who either cannot or will not wait to use the cannabis plant to improve their health and well-being. Please make this known to your elected officials, doctors and anyone else who will listen and continue to fight for our natural right to use a plant.

Let’s end the needless nightmares and allow the dreams to prevail.

~Commonwealth Criminal

Monday, September 26, 2016

We still wait...

As I scrolled through my Facebook memories from a year ago, I came upon this picture from our September 2015 rally at the Capitol. It was an exciting time back then. A time of hope and optimism as we rallied with our heroes in the legislature fighting hard for the patients. But today, with our medical cannabis bill signed into law, as I view this picture, a mixture of sadness and anger hit me all over again.

Why? Because all of the kids in this picture are able to now use cannabis to treat their seizures in the state of Pennsylvania...all of them except mine.

My son, unlike the other children, is an adult. He was discriminated against by this PA state legislature because even though cognitively he is 4 years old, chronologically, he is 20. It’s a good thing that he can’t understand that he was left to wait as it spares me the pain of trying to explain to him that, apparently, his suffering doesn’t matter as much as the other kids. He is not alone. Act 16 left the majority of eligible medical cannabis patients stranded without immediate legal protection offered by the safe harbor provision. Unlike minor children, all adult patients must continue to wait for the full implementation of this program. They must continue to suffer or risk legal prosecution, for no other reason than that they were born before 1998.

       The veteran who fought for this country and came back with PTSD, has to wait…  

       The cancer patient who would like to find out if cannabis can stop the unrelenting nausea brought on by chemo, has to wait...

         The chronic pain patient who is desperately seeking a safer option than the currently prescribed opiates, has to wait…

         The MS patient with painful spasms, has to wait…

         My son, with intractable epilepsy and autism, has to wait…

Personally, I can’t imagine why the legislature offered the safe harbor to only minors in the first place. Was it a mistake? Was it an oversight? Did language get confused during the rewriting of the bill when it got to the House? Or was it...dare I even think it….to help children so they could “look good” to the electorate in this election year? I’d like to think it was one of the first three explanations, but the longer this oversight goes on without correction makes me fear that it was the latter.

For now, I will watch all my friends and fellow “mama bears” receive their safe harbor registrations, knowing that for the first time since we started this fight together, I can celebrate for them, but I can’t celebrate with them. The moments of success I have already begun to witness often bring me to tears…bittersweet tears that mark both the joy I feel for their child but also, the pain I feel for my own.

I continue to check the Governor’s website periodically to see if his office, the Department of Health, the new medical cannabis program director, the newly appointed board or anybody in the legislature has even mentioned fixing this mistake. Where are all our heroes in the legislature now? Did they forget about the adults? So far, nothing…

         We still wait...

~Deena Louise

Monday, August 8, 2016

One Last Love Letter...

I’ve sat down to write this blog at least 10 times now. Each draft has landed in the trash bin of my desk top. I’m determined that this will be the one.

As a special needs mother, I used to feel so isolated. I know so many of you can relate. You can have the most incredibly supportive and loving family, yet, you find that you feel so completely and utterly disconnected. Sometimes your family feels it right there with you. Vacations aren’t vacations anymore. Holidays have changed. There are, at times, dark clouds of uncertainty and frustration that can cast an insurmountable shadow over every waking moment, try as you may to smile through it.

One afternoon, my mother, knowing that I was choosing to pursue the legislative battle that was medical cannabis treatment for my daughter, called and asked, “Are you the mom that’s going to be on CBS at 6?” I laughed, confused at the question, and assured her it was not going to be me on the news. But I made sure I tuned in to see who it was. Little did I know, I would never again feel isolated.

There she was, at the beginning of something truly amazing. I was glued to the screen, watching, listening to every word. Louann Speese Stanley told the story of her daughter, Diana, 16 at that time. She had suffered from intractable epilepsy since she was 9 days old. Louann, like so many of us, had seen the CNN documentary, "Weed", which I believe first aired in August of 2013. I immediately found Louann on Facebook. She lived 20 minutes from me. She then added me to an online group of parents who were ready to dive in to politics. For most of us, this was a first, but dive in we did.

Our group grew daily. We were joined by seasoned activists from several other groups. Many of them took us under their wing and were eager to see what would unfold from this rookie group of “pot moms.” Initially many of us simply wanted to get our hands on anything that would keep our children in the land of the living. But very quickly, as many adult patients joined our crusade, it became so very much more. None of us had even realized that in 2009, there was a significant push to further this cause. Many adult patients testified at a House Health Committee hearing for SB1181, Representative Mark Cohen’s medical marijuana bill. Both Cohen, and Senator Daylin Leach introduced bills that year, clearly they were ahead of their time.

Although the stories were compelling and the science present, the bill died in committee at the end of that session, much to the despair of many ill Pennsylvanians who were dialed in long before us. Every once in a while, it hits me. Had those patients really been heard, really been felt for, many of the patients that we advocate for now would never have endured such devastation. So many families would not have had to burry their loved ones. But I remind myself in those moments that none of us would have been brought together had that been the case. That’s how I cope with the heart-sickening feeling that lives were lost that should not have been. Because we wouldn’t have found each other otherwise.

Over the past few years, often over a late night phone call or a tear filled hug at the Capitol, many of us would share that we had all felt that something very mighty brought us together. I remember my sister, Jana, consoling me one day. She said, “There’s a purpose for this, Lolly. God doesn’t make kids get sick. But he sometimes allows people to become ill because this serves a greater purpose.” I have always taken great comfort in that. In the face of tragedy, in the face of illness, this community served a purpose so pure and so beautiful. Together, we have ensured a much brighter future for countless residents of the Commonwealth for years to come. We have given doctors “another weapon for their arsenal,” as our beloved Senator Folmer always says.

Over the past three years, I have fallen madly in love with so many people that I never would have had the chance to meet had my daughter not been sick. She really took one for the team, huh? Not a day goes by that I don’t stop and reflect on the impact this journey has had on each of us. We’ve shared so many emotions from rage to heartache to joy. With each moment, we grew stronger. We gained patience as we gained momentum and we grew wiser as we perfected our strategies. I have never been more proud of any effort, by any group.

But, to get to the point of all of this sappy reminiscing, our cause must continue to evolve. And at this very juncture, it is time for me to take a different turn. As of today, I am making a very difficult choice to resign as team leader of Campaign4Compassion. It’s not because of anything crazy going on. I promise. No drama for these mamas. It’s just time. I promise I’ll never be far away, and I promise at every step I take forward, this community will always be on my mind. And I am truly excited to see the work of C4C continue with the guidance of an amazing team.

So I’ve narrowly avoided crying all over my keyboard while writing this so I’m going to wrap it up. I need to share a few nuggets of advice that have helped me immensely on this journey…

Take no bull. Never. Seriously. Pound down doors, familiarize yourself with “redial”, and keep your finger on the pulse. There will always be an injustice that we need to overcome. Fight. Fight at every waking moment. If you are ever told to “trust the process,” don’t! Don’t trust the process, BE the process! Conversely, there’s never a bad time to write out a thank you card to a legislator that has had your back. Bake a staffer some cookies. Give hugs! Lots and lots of hugs. And when your heart is bursting with love for your fellow man, it will no longer fit in your chest, so you’re going to need to wear it on your sleeve. Don’t be afraid to cry. Don’t be afraid to feel. Be raw. Be real. Be a bad ass. But more important than any of this, be realistic. You can’t always get what you want, but don’t let that stop you from being grateful. “Because you just might find you get what you need”. (Sorry, I can’t say it better than the Rolling Stones.)

With a heart that overflows with love for each of you, Cheers.


Wednesday, August 3, 2016

Marijuana Decriminalization Conversation: The Fair Thing To Do

Decriminalization of marijuana in Pa makes sense on many levels and should certainly be supported by medical marijuana (mmj) patients and advocates. Passage of Act 16, the Pa Medical Marijuana law, was a major step in the right direction but fell short in several ways. Disappointingly, not all patients who might benefit from mmj will qualify for the program – only those who have one or more of the 17 qualifying serious medical conditions. Of equal concern is that cannabis plant material, which is the least expensive form of mmj, was not included as a allowable form of medicine. And even though the Department of Health is working hard to establish the program, it will be at least 18 months until the first patient can walk into a dispensary to purchase their medicine. Additional changes in marijuana law, such as decriminalization, are needed to not only protect those who are seeking to treat themselves with cannabis, but also to lessen the costly financial and social impacts the existing outdated law has on our society.

The value of decriminalizing marijuana law can be seen right now within our state. If you are fortunate enough to be in Philadelphia, Pittsburgh or Harrisburg, you're afforded protections under local ordinances for possession of small amounts (under 30 grams). These three cities have taken a very pragmatic position to how they deal with possession and use of cannabis. They reduced the level of offense and fines, and more or less handle the infraction like a parking violation. These policies are saving law enforcement and the judicial systems time and money, they are no longer ruining lives based of the fabricated fears of a plant, and they are building genuine relationships between law enforcement and the community. This is how it should be across the state.

Efforts to support and establish decriminalization ordinances in other Pa cities is underway and could use your help. Keystone Cannabis Coalition, under the direction of Les Stark is strategizing to change minds and policies on marijuana enforcement in Reading, Lancaster, Allentown and York. If you can lend support to these efforts, please do so. Social reforms seem to be easier to nurture and enact in urban setting, where progressive thinking is often needed to solve a host of complex challenges. The reforms in urban settings offer a path to reform across this state. But that path alone will not be enough. We still need to educate and change the minds of our legislators and fellow citizens in small towns and rural areas of Pa and this time of year offers a unique opportunity to do so.

August is the start of “Fair Season”, and almost every county in the state has at least one within or near their borders. The fairs draw throngs of people from all walks of life to celebrate the harvest and accomplishments in agriculture in an entertaining atmosphere. This is also an opportunity for networking and messaging. Political parties understand this and usually have a booth set up to endorse their candidates. Many times you can find legislators or their staff manning the booth in an effort to promote their platform and ideals and garner support as we approach the general election in November.

The local fair is a great opportunity for you to talk to you elected officials, their staff, or party officials to express your concerns and offer ideas on how government should operate. Let them know how you feel about the medical marijuana law and how the unjust marijuana possession laws need to be relaxed. Thank them for unanimously passing the Industrial Hemp Act. Let them know that you support those who support common sense marijuana reforms. This is the perfect setting to let them know that for the first time, marijuana will be exhibited and judged at the Oregon state fair the end of this month. That is where Pa should be – sooner, rather than later.

Although additional state-wide legislative changes to marijuana laws are not expected to occur any more this year, we need to keep the conversation going in preparation for a big push in the new legislative session beginning in January.

So gather up the family, proudly wear your cannabis attire and hit the fairs. Educate and have fun at the same time.

P.S. And don't forget to thank the farmers. Their tireless efforts should never go unappreciated.

-Luke Shultz and the C4C Team

Wednesday, July 6, 2016

Dear Mom of the sick kid under 18...

Dear Mom of the sick kid under 18...

I know you. I cry for you sometimes. I pray for you, and hope you are well. I feel this connection. I can relate.

I am you.

You have been suffering immeasurable heartbreak, watching your young child's health continue on a downward spiral for all these years...For what seems like forever...

You fought hard for the right to use medical cannabis legally in your state. You took a step outside of your comfort zone and exposed your family's wounds to everyone who was listening. It was raw. It was emotional. It was a punch to the gut every time you had to tell your story to another person.

Telling it once should have sufficed.

I know you didn't stop there. You invested yourself in a cause far mightier than you'd ever dreamt it could be. You extended yourself to a community of patients and their loved ones. You got to know them. You embraced them and wept during dark moments. You cheered and celebrated with them during the best of times. You fell madly in love with them somewhere on the journey.

And now...You...You feel like you can't smile or feel even a hint of joy because your child is soon to be legally protected, when others are not. You won't talk about the safe harbor. You won't offer advice or even acknowledge that it exists because someone might mistakingly think that you are okay with your child being put before theirs.

Here's the thing, my friend. That safe harbor wasn't put in to SB3 because your child was more important, and others less. It was added as a fail safe for parents who need to apply to be a caretaker, knowing that if you have a recent drug possession charge, the state can't authorize you to be responsible for your child's medical cannabis.

Doesn't it all just drive you mad sometimes?

So listen, I need to let you know something. When you come across these angry people who troll social media and say angry things about your child not deserving help, you can't let them bring you down. You can't let them steal what little peace you have right now. And when a genuinely broken member of our adult patient community expresses their anger, know that they are not angry with you. Know that this is an injustice that is difficult to bear. Know that you must try to bring them comfort, as you know how to bring comfort so well.
None of this is fair. It's not fair that adult patients have to wait. It's not fair that you still have to violate federal law. It's not fair that we had to fight this hard for anyone to still be denied access to medical cannabis.

Your kiddo needs this. No, not more than anyone else. But denying them the right to protection won't suddenly grant an adult protection.

Own it, my friend. Get your documents in order and you register for the Safe Harbor, and don't look back. Not once.

And don't dare stop fighting for more.  The real tragedy only lies in serving yourself and walking away. Keep up the fight. Be a bad ass. Don't stop telling your story. And don't stop listening to other stories. They will be your source of fuel as you continue this journey.

Cheers to you, with all my love...

Your fellow mom of a sick kid under the age of 18

For more information on the Safe Harbor: Temporary Guidelines for Safe Harbor Provision of Pennsylvania's Medical Marijuana Program.

Wednesday, June 15, 2016

Choose Patients

On April 17th, 2016, Medical Cannabis advocates in the state of Pennsylvania enthusiastically rejoiced as they witnessed Governor Tom Wolf sign SB3 into law. Victory was ours. Compassion won. And for a moment, there was peace in the hearts of patients and their loved ones.

We had been assured that as soon as the law went into effect, that parents of children who suffer from a condition listed in SB3 would fall under the protection of the “Safe Haven”. We were told during the time temporary regulations went into effect, after a 6 month period of drafting, that adult patients would be issued some sort of protection as well. We were satisfied.

Our beloved Luke Shultz, a chronic pain patient
who patiently continues to wait for safe access to medical cannabis.

Although the framework for the safe haven was set into the legislation, the adult protection seems to have been a costly assumption. It has now been communicated to us that any patient over the age of 18 will have to wait the 18 to 24 month period that it will presumably take to see our program operational. Not to worry though, “No one will prosecute patients,” they say…

Last week, our advocacy community was alerted to action being taken in the House Judiciary Committee. After almost a year in that committee, House Bill 1422 was being brought up for a vote. HB1422 amends the The Controlled Substance, Drug, Device and Cosmetic Act, specifically the guidelines on marijuana possession.

As written today, HB1422 proposes that for the first offense, the guilty party would be fined no less than $500. For a second offense, they would be fined no less than $750, both of these being a summary offense. For a third offense, the charge would be a third degree misdemeanor and they would pay a fine of no less than $1000.

Some have said the intention of this bill is to unclog the judicial system. That would make a whole lot of sense if these fines were perhaps slightly more reasonable.

Some say the intent was to undo the decriminalization ordinances that Philadelphia and Pittsburgh have enacted. We may be getting closer to the truth here.

Some have said the intent was to deter people from using marijuana, after all we can’t just have everyone walking around with a buzz… But wait, there’s plenty of booze to get the job done. So…I’ll be the bearer of bad news, I suppose. Their logic is deeply flawed.

One brutally honest soul speculated that this was intended to generate revenue. Marijuana users are low hanging fruit.

All of this sort of left my head spinning. I just keep wondering if anyone was really listening to us. I did not just spend 3 years of my life fighting for patients to have the right to use medical cannabis just to spend the next 2 years watching them be punished for doing so.

If elected officials in the state of Pennsylvania wish to perpetuate the war on drugs, then I must respectfully ask that they take patients off the battlefield.

For 2 months, we have been diligently working towards a solution for the adult patients that don’t fit under the umbrella of this safe haven, so pardon me if I say this feels like a cold hard slap in the face of our community. While I realize if this bill were to actually be signed into law, jail is no longer a threat to them, I must ask that our legislature consider the outcome of the case where the chronic pain patient who lives off of a modest disability check can’t pay their fine. Spoiler alert: Their ass goes to jail.

A handful of adult patients who need to be legally protected...

Sure, sure, I understand many of you may think this is a dramatic overreaction, but I assure you ladies and gentlemen, unless you or your loved one are living day in and day out in agony, suffering from a disease from which you can only find relief in using medical cannabis, you have absolutely no right to expect these exhausted families to stay calm.

We need you to know, there are real people suffering, waiting for you do what is right. There are people whose conditions didn’t make the final cut. There are mothers who have children, who are over the age of 18, however, due to years of seizures, have suffered such horrific brain damage that leave them at the cognitive level of a small child. To us…to the people who heartbreakingly love them…they are still our babies. We are begging for your help. We are still waiting.

Two of my very favorite people, Susan and her daughter, Sara (21),
who sadly will not have legal protections to use medical cannabis
for her Autism and Crohn's Disease.

I’ll leave you with the words of Stephen Grellet, “I expect to pass through this world but once. Any good thing, therefore, that I can do or any kindness I can show to any fellow human being let me do it now. Let me not defer nor neglect it, for I shall not pass this way again.”

Choose kindness. Choose compassion. Choose real, meaningful reform, as a gesture of good will towards a community of weary patients.

~Latrisha Bentch