I can’t even put into words what it’s like to finally get your deepest concerns for your children’s well-being confirmed. For a long long time, I’ve had a sneaking suspicion that the many medications prescribed for my 3 children with Tuberous Sclerosis Complex were not all necessarily contributing to longevity, quality of life and/or actually doing anything more than mitigating some side effects from another medication. And in several circumstances, actually making symptoms worse. It’s like waking up to realize your worst nightmare is actually real and that in order to address the situation, you’ll have to go against the embedded ignorance, fear and doubt to take matters into your own hands and go off the grid to go on. You’ll probably lose the support of many, including your own family. When you have three children with a genetic condition such as TSC you’ve known for a long time that life is unfair, and you’d have to accept that on a very deep level and be ok with that in order to remain sane.
So you play along, educate yourself, immerse yourself in reading and learning everything you can get your hands on in order to navigate the medical system and get your kids the best possible care. If it means moving, changing jobs, willfully making choice after choice between a rock and a hard place to ensure good relationships with their medical team, educational team, social services team, mental health team, your ex-husband, your friends, your family, extended family, you do it. You suck it up and smile and nod and bend as much as possible to make things work. For years. Even when things fall apart, repeatedly and you end up falling apart, you still remember to be polite and advocate for them in the midst of some tornadoes of circumstance and trauma that are too painful to recount. You band-aid yourself together and do what it takes, even if it hurts you as a human being. Even if you have to “break the law”, sacrifice relationships, career options, your own sense of ethics and morality, and more just to keep them alive. You find yourself caught repeatedly in the mindset of …” It’s just a lifetime after all.” You’ll get another million lifetimes so what if you run like mad and push yourself to the extreme until you drop dead in this lifetime? So, the fuck what? It’s what moms, dads, families everywhere do, what many do because there is no other obvious choice and we are often too caught in action and reaction to even consider there might be another way.
When you first get a diagnosis, you die a little but then you have to move on to hopeful. You sign on to worshipping those with medical training and knowledge even as time passes and your lived experiences outpaces anything they can even come close to understanding about living with a chronic condition like TSC. You still blow the docs. Metaphorically of course. And whoever else you think might help get you better care for your kids. And I guess it’s helped. (switching to first-person). We’ve had doors open and received great care overall in all the siloed silos of the medical-industrial complex and the other fringe institutions such as mental health and social services. We’ve done better than some and the kids are all still alive. Here’s the thing. I don’t think I can do it anymore after learning what I’ve learned over the course of the last 6 months.
This is how I’m going forward:
I want to know why each medication is prescribed, not just a simple answer but the metabolic pathways of each medication, why these medications were chosen in combination, the interactions between the ones being taken currently, how the effect of each is impacted by the other medications they are on, the potential interactions with other over the counter supplements and foods, the research used in deciding to use these meds and the long term impact of taking these meds, in combination and how it’s contributing to overall health and wellness over their lifetime. Would you take them yourself? Would you give them to your children? Are all prescribers collaborating on dose changes and how that impacts the other medications they’re on? I want to know.
Regardless, until I have investigated cannabinoid medicine and consulted with those utilizing this option that have had success decreasing or eliminating pharma significantly or completely, I will not go gently into this good night and I will not sit down and be quiet. These are my precious loved ones. Human beings for whom I have been responsible for the last 23 years. I’ve watched from the sidelines helplessly and wondered the whys and how’s I just mentioned yet I trusted. Now I learn that my trust may have been misassigned and many of the medications they are now on are not necessarily contributing to anything other than a bandaid on a bullet hole. They have a condition that affects many bodily organs, a systemic condition and rarely has there been a holistic consideration given to any aspect of their care. A bit more so before they aged into their late teens but progressively it’s become worse.
They will be physically compromised for life if they remain on these medications long term and most likely develop various other physical problems because of the medications. I’ve been fighting tooth and nail for some level of stability for these kids. For some hope. And now I am realizing there is none unless I find a better way. I’m killing myself already trying to help them. Every seizure is a setback
I watched as my post-ictal daughter sat on the bathroom floor after suffering a breakthrough seizure. We heard her in the bathroom but didn’t realize she was having a seizure. We thought my son was in there banging around, getting frustrated with shaving or something but no, she was having a nasty tonic clonic seizure. My reaction to this was complete furor. This is the first time I’ve reacted as such.
I’ve seen this show too frequently for too long and have now learned too much to just go back to blowing the docs and resorting to the ever kind and friendly parent who tries to see the bigger picture and work with all the docs, educators, social service providers and be endlessly humble, grateful with no lingering resentments. It’s been a lot of time folks. Over and over, in one-way shape or form or another. By all counts, if it wasn’t for modern medicine, these kids would be dead. So do I owe blind allegiance to modern medicine for the rest of their lives, even though I am not sure it’s not slowly killing them? I realized that I have come to the end of my rope managing their TSC and unless I have room to use cannabinoid medicine to try and wean them off some of this pharma, I am not going to be able to case manage anymore.
I was angry about Sara’s recent seizure b/c I knew what the outcome would be. My heart was already broken and is broken in some way daily. Sara would go to the ER, they’d check her over, check her bloodwork and send her home. We’d report the seizure to the neurologist and they’d up the dose of one of her meds. And try to figure out ways that we had been negligent, or she had overlooked something or something other than the mere fact that what’s going on isn’t helping. Sure, she’s better than many with TSC and sure I should be grateful, and I am. The doc from the ER made sure to remind me of all these facts. As if I should just accept it and move on, back to status quo. But is that how I’m supposed to roll? Now she cannot even think of pursuing her license for another 6 months. She’s a college student. She’s trying to move towards independence but the details of her pharma management and other medical care are more than she can take on adequately. I cannot afford to continue to case manage unless I have some support and guidance to try some other options.
Her day is hijacked by her symptoms. My days are hijacked by their symptoms. Many of which I squarely place the blame on the pharma. We’ve slowly over the last 7 years, chipped away at the other variables. Their mental health. All have received intense bouts of therapy, as have I. We’ve all attempted to improve our diet despite financial limitations. They’ve all become mindful of the importance of physical activity and yet so often there is just not the energy ever for this as the mental energy needed to start, is needed elsewhere right now. On med management. Or calling MassHealth. Or emailing and talking to doctors. That doesn’t include any other activities of daily living either. How much energy does an individual have after all when every single day some wild unknown, TSC related or not, will jump up and throw a wrench in best laid plans?
This is my jumping off point and why I am now passionate about this polypharmacy project. I want answers and I am not waiting for them; I am pursing the use of cannabinoid medicine right now. I’ve made the connections in order to start down this road and intend to follow through. I am scared shitless, broke, emotionally and physically exhausted but what I’ve learned from so many in cannabis industry is actually hopeful. Real hope. Not just hope that the seizures will stop or the chronic stomach issues, headaches, random illnesses, depression, anxiety, ADHD symptoms, or any of it but hope that maybe with collaborative and informed treatment with cannabinoid medicine, there whole being will start to find ways to heal. For more information on our latest work related to polypharmacy and cannabinoid medicine, visit our website at: https://tsctalks.com/tsc-talks-cbd-cannabinoid-testing-crowdfunding/ or email me at: firstname.lastname@example.org.