Tag Archives: Caregiver burnout

Activism, Cannabis, Dravet, Epilepsy, Marijuana, Mom, Mommy guilt, Parenting, Seizures

Legal does not = Accessible. Pediatric cannabis in MA

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I live in a state where medical marijuana is legal. Was voted for by 63% of voters in 2012. And yet there is still no legal access for patients. I’m going to give you a minute to puzzle that out-how voters could have passed a law 3 years ago that still hasn’t been implemented. Wrap your brain around it yet? Yeah. Me neither.

Essentially the DPH f-d up. And every time the media pointed out another time they f-d up instead of addressing the problem, they stalled the process a little more. And a little more, and a little more. So now-nearly 3 years later there is not a single dispensary open. None. Not one. And the caregiver law is overly restrictive only allowing a caregiver to grow for 1 patient. So how exactly is it feasible for a caregiver to invest the time and resources into sourcing and growing a rare, valuable, finicky high cbd strain when they can only serve 1 patient who needs it? Short answer-it’s not. We passed a law, but in the after effects of writing the regulations the scope of that law got smaller and smaller and smaller until it became an unworkable law and left us where we are today.

So, let’s talk about some of the problems with it. I am obviously fighting for Haley to access cannabis, loudly shouting from the rooftops about it (I hope you are too!). Initially the pediatric regulations required Doctors to prove that a child was within 6 months of the end of their life to be eligible to use cannabis. Now Haley lives with the possibility of a seizure ending her life any day. But she doesn’t necessarily have an expiration date. We wrote to the committee and our epileptoligist Dr Thiele testified before the committee that pediatric patients with chronic conditions could greatly benefit from cannabis even if they weren’t terminal. We might actually save lives instead of just easing them-Imagine that. Eventually the end of life clause was removed from the final regulations.

Great news right? Yeah…BUT. The pediatric regulations became so burdensome for patients AND doctors that they may as well not exist. Pediatric patients are required to have signatures or recommendations (recs) from 2 separate doctors not in practice together that state that the benefits outweigh the risk of treatment. One of those doctors MUST be a pediatrician or pediatric specialist. And you must have and maintain an established relationship with the doctor writing the recommendation. At first glance it all seems workable in theory. Then we get to real life. Because I forgot to mention that only Doctors that have completed a certain number of continuing education hours specifically on cannabis are eligible to write cannabis recommendations. How many pediatric specialists do you think are completing those continuing education hours on cannabis?

I know several pediatric patients, us included, who lobbied our doctors, long time pediatricians and specialists. We put together folders of information, we painstakingly presented our cases. In many cases Doctors empathized and agreed with us but were blocked from writing recommendations by the hospitals they are employed by because they rely on federal funding that they fear losing. Other doctors refuse to write them because they don’t believe the program is regulated well enough and only support a pharmaceutical model of dispensing cannabis. And then there were the rarities, the doctors who said yes. I see the potential here. Yes I will help you. So last year we got 2 doctor recs and Haley became a legal patient. But still without access…(Compare that to our neighbor Maine where they allow nurse practitioners to write recommendations and you only need one and they have open dispensaries and working caregiver models. Or our other neighbor RI which also has a strong established cannabis program accessible for children without burdensome, unrealistic, unworkable regulations)

Now the DPH has decided in the interest of progress they will require patients to register, finally addressing the legal gray area of having no patient registration system and the arrests that were taking place because there was no legal recognition for patients. No card or certificate to carry other than the Dr rec. Sounds good. Progress. Finally! Uhhhh, not so much. Where exactly is the justice in collecting money from people to register as patients for a medicine they still have no foreseeable access to? I’m sorry? Is that shortsighted of me? Or just reasonable to expect that if you want my money to be a patient there better be medicine to buy? And when you go to the pharmacy to pick up your Valium does the Doctor disclose your condition to the pharmacist and everyone that works in the pharmacy? If you have anxiety or seizures or some other disorder being treated by this highly addictive, dangerous medication?  Of course not! That is a violation of HIPPA and patient privacy. Yet as a cannabis patient you have no right to privacy and your doctor is forced to disclose the condition they are deeming treatable. Now imagine being a parent and being put in the position of disclosing your child’s medical condition and status as a cannabis patient and location of their lifesaving plants to whomever the state decides should have that information. (coincidentally caregivers/patients often get raided just before harvest leaving the patient with nothing…again. Just saying I have seen/heard too many of these occurrences to be called coincidence) But ok. There is a way to be legally recognized as a patient without a legal way to get medicine unless you have a caregiver willing to cultivate just for you or if you live in a place that permits you to cultivate your own. And you don’t get raided and lose your medicine. I haven’t met one yet, but I’m sure they’re out there trying not to draw attention to themselves. To them I say-Keep it up! Save your child!

Until…Jan 1st. Remember those continuing ed credits Doctors must complete? They must be completed by January 1st. There have been barely a handful of pediatricians and pediatric specialists in the entire state willing or able to write recommendations. Of the dozen or so children I know who were able to secure them more than half were notified recently with the registration system roll out that their doctors either did not deem it feasible to complete the number of continuing education hours required in order to write the recommendation for the single patient they see that they are writing it for, or their permission from their overseeing hospital was reneged due to HIPPA violations of submitting to the DPH.

Now what? Now we have left our most vulnerable patients-the children-without any access at all. And you think that this program was set up to be safe for them? It was set up to fail. It was set up to let children die without access.

I live in a legal state with a child who several doctors agree would benefit from cannabis, yet there is no doctor willing to put in the work required to help her and no medicine to give her. But here you go DPH…here’s my $50 to try to register her as a patient until our recommendation expires and here too is my $100 for a hardship waiver so I can grow it myself. Because clearly you care about the money and not the lives at stake. We have a law. But it’s an unworkable law and children are suffering and dying because of it.

So, insert slow, sarcastic clap here for the writers of these regulations that are allowing children to die. Bravo I guess. You got what you set out to do. A whole lot of money and no cannabis…Maybe you can allocate some of that money to pay for the funerals of the children you are killing…

(*Image attached is Haley mid seizure. She is experiencing anywhere from 10-50+ seizures every single day while we wait for access. I know there will be people who don’t think I should share this vulnerable moment, (I struggled with it myself) but the truth is that every moment in our life right now is vulnerable. We might seize hope but we endure our share of despair and it would be wrong for me to sugar coat what Haley is enduring because of political and medical agendas. So here it is at its most raw…)

Activism, Cannabis, Dravet, Epilepsy, Marijuana, Mom, Mommy guilt, Parenting, Seizures

Mommy Guilt

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Mommy guilt is real folks. For all Moms, special needs or not…

I feel guilty about the light, typical things that all Moms relate to. I also feel guilty about the hard, heavy hitting stuff like the fact that no matter how hard I try to create a sense of normal, our normal will always be very, very different. I feel guilty about the concessions I make balancing safety and creating some semblance of childhood. I feel the weight of guilt every time she collapses and convulses and gasps and I know that there is a plant out there that may help her and I’m not doing enough to get it-I will always feel like I should be working harder, I should be lobbying harder, staging more political action, speaking out more. But newsflash here-I’m tired folks. And then I feel guilty about being tired and it’s all a vicious cycle.

I feel guilty about the fact that my 13-year-old feels isolated from her friends because they expressed that they are uncomfortable coming over because of Haley’s seizures. I feel guilty that the home I’ve tried to make a safe haven doesn’t feel welcoming to others. I feel guilty that I’ve played martyr for so long that I feel selfish even taking snippets of me time, even though logically I recognize that they are necessary, I carry that guilt. I feel guilty every time I pull up late in the drop off lane at school, or forget picture retake day, or forget to send forms in on time. I feel guilty about the decisions I have made even if I acknowledge that I did my best with what i knew at the time, it doesn’t change that the guilt sits with me.

I feel guilty accepting praise for things that I consider basic accommodations,like making hot cocoa that is appropriate for Haley’s restrictive diet therapy. I feel guilty for the experiences both small and large that my children are missing out on. I feel guilty that even when we do something as seemingly basic as go to a Christmas party my child misses half of it because she has a seizure that knocks her out for the rest of the evening. And instead of playing with her friends she passes out on the couch for the rest of the night. And I feel relief that she is asleep and I don’t have to chase her around and can leisurely visit while watching her instead of chasing her around, and then I feel guilt at my relief.

I feel guilty that I can’t be in 2 places at once and sometimes my kids have to miss out on things that are important to them. Totally unrealistic I know, but there it is anyway. I feel guilty every time I raise my voice or give yet another exasperated sigh because I am too darn tired to have enough patience. I feel guilty that I am so darn tired, even though I haven’t had 8 hours of sleep in, umm, hmm, I’m not really sure how many years.

I feel guilty that I’m not a better friend. I feel guilty when my friends are so wonderful that they drop off soup just because they see how much we are struggling right now to get through each day. I feel guilty that I cannot right now return the favor because i am trying not to drown in both obligations and sorrow. I feel guilty that I am so damaged that  cannot mask the despair that plagues me.

I feel guilty every time I shove a little white pill in my daughters mouth because the seizures have yet again started to cluster or last too long and are sneaking a little closer to life threatening. I feel guilty that I fear yet another holiday spent behind hospital walls.

I feel guilty every time I read another obituary for a child who died while waiting to access cannabis. I feel guilty every time I see yet another child hospitalized for seizures that might be helped if they only had access to a plant. I feel guilty when I see the pleas of parents on cannabis who are having trouble navigating the world of trial and error and dosing questions. I feel guilty that I don’t know more, can’t do more, can’t help more. I feel guilty that I cannot even help my own child. I feel guilty that I am pushing to schedule a surgery I don’t really want my child to have to implant a VNS that I don’t want her to get because I cannot wait any longer to do something to help her.

I feel guilty that every day Christmas inches a little closer and my to do list grows instead pf shrinks. I feel guilty every time I look at my color coded white board calendar that looks like it threw up on itself and wonder when I am going to squeeze in all of the other things I need to do into the days that already appear full. I feel guilty that I am yet again not going to get Christmas cards out.

I feel guilty that even though I try so hard-SO HARD- to find the beauty in this journey and to be grateful for all of the people in our lives and the moments of joy that probably outweigh the moments of despair I have days where I simply cannot. And then I feel guilty about seeming so negative when there really is beauty here. There is love, so much love. And joy. And heartache, but beauty in the ache. And there is hope. And guilt.

And then I feel guilty that I feel guilty.

Activism, Cannabis, Dravet, Epilepsy, Mom, Parenting, Seizures

Dirty Little Secret

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Every parent, every person really, struggles with finding their right balance between work, life and caring for themselves and caring for others.

I am a nurturer. I am a caretaker of many people. One of them happens to live on the brink of life and death daily. It takes a toll on me. Emotionally, physically, spiritually. Caregiver burnout is very very real. But that’s the dirty little secret that parents, special needs or not, aren’t supposed to admit.

Yesterday was a really difficult day. I turned outward to my support network. I unveiled my anguish, and kept it real. I put in black and white (actually a colorful bar graph but black and white sounds better) the evidence of Haley’s continually escalating seizure activity. And while the support was, as always, comforting, it wasn’t enough. I needed to schedule in a break down. (Break down to break through according to one wise friend)

The problem is that there is no time. There are still children to care for and feed and drive places and laundry and dishes and work and dog hair to vacuum and leaves to clean up and a garage to prepare for winter and and and…I couldn’t do it another moment.Those have to’s would just have to wait. So I dropped Haley off at school and headed for my sanctuary-for me that is the ocean. If you don’t have a place that instantly allows you to exhale, I highly suggest you start seeking one.

I allotted myself one hour of me time. I managed to disconnect for half of it (pretty good for me!). I wrapped a blanket around me like a shield and allowed myself the luxury of breathing freely, void of the ever present tension that lives in my throat. It was a windy day-my favorite kind at the beach. The breeze, the waves, they speak to my soul. They whisper contentment and calm my anxiety like nothing else, Sitting there just watching and listening, then walking the dunes, choosing the one shell I collect on each of these trips, all of it in complete solitude, yet connected simultaneously.

So, you…yes you. Stop looking over your shoulder, I really do mean YOU. It doesn’t take a massive amount of time, it doesn’t take money, it just takes commitment to admit when it is all too much and you need to decompress or explode. It can be a walk in the woods, a bubble bath, an hour of mindless TV…whatever your sanctuary is this is a reminder to utilize it. You are worth it.