Polypharmacy Rant

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.

bunch of white oval medication tablets and white medication capsules

Photo by Pixabay on Pexels.com 

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. 20181012_164932_0001

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.shallow focus photography of cannabis plant

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.70 guests (1)

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: pjlacy6@gmail.com.img_20191017_073553_759

 

 

 

 

Posted in #IAMTSC, Cannabinoid medicine, cannabis, epilepsy, special needs, tuberous sclerosis complex | Tagged , , , , , , , , , | 3 Comments

Back to School and The “Graduation” Navigation

B.S.(Before Script)…in case you thought otherwise.  

So, now summer has past and Jack just started back to school. He had a decent summer and is now attending the “post-grad” program at his local high school.   The following post was written the day before he “graduated” and brings to light the fact that many young people with some measure of a disability are not able to receive a high school diploma due to circumstances beyond their control. I was all fired up about this huge issue at the beginning fo the summer, but time and more emergent challenges have pulled me away from the fierce frustration I feel when I think about all the loose ends left for Jack to navigate as he works to obtain the skills and knowledge he’ll need to move to counter the lack of an official high school diploma  and seek to reach his personal goals of a job, a car, and some measure of independence.

Disability employment continues to be a challenge for many and while there seem to be more and more forward-minded options available, there are often many pieces of this puzzle that have to be considered on behalf of the individual who is seeking such services. Pieces that are often not a part of most of the programs offered through various employment rehabilitation services such as Mass Rehab Commission and other disability hubs that offer tons of options but little thought given to the daily realities of families needing to utilize said services for their loved ones.  The main one I would like to mention is transportation.  Public transportation is scarce in rural and even suburban areas. Parents & caregivers and/or other family members are often unable to provide transportation consistently to either the place of employment or training program or to other social events designed for those with similar challenges. What seems like a minor issue can often become a major barrier.  So as Jack progresses in his “post-grad” program and is able to find some employment opportunities, I am hoping that we will be able to find creative workarounds to enable him to participate.

My son, Jack, 18 with moderate Tuberous Sclerosis Complex is “graduating” from Wachusett Regional High School this very evening. He’s getting a certificate of completion, NOT a high school diploma, which I signed on to for several reasons. Mostly because of TAND. What is TAND? It is land of confusion, is what it really is, but it stands for Tuberous Sclerosis Associated Neuropsychiatric Disorders and is basically the encompasses the entire umbrella of mental health diagnoses.

jack cert

Jack receiving his Certificate of Completion

People that have TSC have a 90% chance of having some degree of TAND and not to digress, but it can be THEE most challenging aspect of a TSC diagnosis and often hits just when one has about had it up to the eyeballs with other aspects of TSC. So imagine as a parent, you’re trying to get a handle on your kid’s life-threatening seizures, stay on top of kidney manifestations, make sure you’re keeping up with the 55 or so prescriptions that need filled, refilled, negotiated, covered by insurance,  taken your kid for various pokings and proddings such as blood tests, MRI scans, neuropsychiatric evals, school IEP meetings to name a few….and then, just when you pause to catch your breath, your kid starts acting like a wild animal. Seriously. An uncaged wildebeest.  No one knew. There were whisperings and mutterings of “behaviors associated with TSC” and some writing on it, but not anything that was solid enough to catch the attention of professionals working with those impacted by these unbelievably intense behaviors.

This complete lack of understanding of TAND hijacked his entire educational experience up until about 3 years ago when things started to shift. We had to resort to dire measures including 3 psychiatric placements, locks on all our food and a lot of structure at home, routines, integration of mental health professionals, his medical team and his educational team to address his TAND related issues (aggression, rage, violent outbursts, anxiety, ADHD…probs more I can’t think of).  He is now able to manage his behavior without escalating to the point where we have to ride out the TAND wave of anger/frustration/grief/sorrow, 80% of the time. Which is huge, coming from a kid that was attacking me, threatening and terrorizing his siblings, his teachers, his therapists, and basically raising unbridled havoc for a long time period. It was painful to experience for all of us and that certainly includes Jack.

As “graduation day” has been approaching and I consider the implications of this choice, I feel the need to share a glimpse of Jack’s story.   I am offering a disclaimer at the start so those who might sense they need to brace themselves for a sob story or an angry rant, or a gut-wrenching tale of victimhood and persecution, you need not. The fact that this is happening is that there is no one to blame and doing so would only create further divisiveness and my goal in sharing this glimpse is to encourage connection and collaboration.

As I mentioned earlier, Jack was born with Tuberous Sclerosis Complex which is a condition that causes benign tumors to grow in different organs of the body.  Jack started having seizures very early on in life and has been on many different medications to control his seizures.  He’s also on many other medications to manage other aspects of his TSC, such as blood pressure medicine and one that controls the growth of tumors in his kidneys. Jack has had many hospitalizations, medical procedure, tests, and appointments and will need to manage the medical aspects of his disease for the rest of his life.  While he is medically stable, and the prognosis is good for a typical life span, that requires close monitoring, frequent communication with his doctors and the pharmacy and much more.

Jack had seizures that lasted over 2 hours.  Jack also had to change schools about 7 times during the course of his education within the WRSD to classrooms that were able to support the level of need his disability presented.  There were no adequate programs for Jack anywhere that we could find because his behavior was so challenging.

Tuberous sclerosis complex (TSC) is associated with a wide range of cognitive, behavioral and psychiatric manifestations. These manifestations are often of greater concern to individuals with TSC and their families and caregivers than other symptoms of TSC such as epilepsy, skin lesions or kidney problems. TAND (TSC Associated Neuropsychiatric Disorders) is a new terminology to describe the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorders, intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties.”.

Jack went through 3 psychiatric placements and many years of intensive therapy to learn to manage his behavior to the degree that he was able to learn to read.  His behavior was so frightening at certain points that we thought he’d need residential placement. He was attacking his own family and we all needed to work together as a team to help support Jack as he started to learn to manage his own behavior.

Jack also had problems managing his impulsivity in relation to food.  Because of his increasing weight and metabolic issues, his family went to desperate measures to limit his access to food that has included installing locks on fridge/freezer and pantry. 

Jack has lost close to 100 lbs since we locked everything up.

Jack has finally started to read beyond a first-grade level.

Jack finally was able to participate in some school-related activities such as helping manage the JV men’s basketball team

Jack has overcome more in his short 18 years than most people will in a lifetime yet he is not earning a high school diploma.

So when he walks across that stage tonight, I will weep tears of joy and despair at the same time. Joy that he has made it this far and we did not have to institutionalize him.  He is a happy, overall well-adjusted kid with TSC. Despair because despite all this,  he reads at a third-grade level, he cannot fill out a job application, drive a car or manage his prescriptions or many medical and other appointments, communicate with social service providers, or interact with the team members of his hs “post grad” program. All that falls on me, well, not just me. Of course. It’s never just one person. There’s many, but on the frontlines, yes, it’s me. And mind you, I am not complaining, but I am tired.

There are many positives for Jack and I am confident he will make his way, with my help, my partner’s help, his father’s help, and the help of a significant number of other people in his life. There are incredible unknowns with TSC/TAND and Jack.  I’ve got decent relationships with the team at his program to continue to facilitate his trajectory in an upward trending fashion. So what is my problem? I guess it’s just this continual wake-up call to the reality of the fact that there are not a lot of long term solutions for our kids and I’m going to be helping him for a while yet. TAND gets complicated, is complicated and for us, it took almost everything we had to get to the point where we weren’t existing in some level of fear daily. Behaviors started early. Schools are not prepared to understand TAND but now we have documentation to validate and advocate. I do not live with regrets but take advantage of the tools we have available to us in the TSC community, the TS Alliance, various Facebook boards, etc, etc. My two cents. Happy Graduation Day Jack. You’ve done your best and you and everyone who knows you is exceptionally proud.

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Let’s get together and Podcast!

LISTEN TO LATEST

How podcasting can build and gather information and motivate change within communities affected by rare medical diseases

Creating podcasts within communities affected by a particular disease, and initiating the discussion between parents/caregivers/patients in an interview format, is a progressive way to gather novel and unique information regarding the reality of living with a particular disease. Listeners can now hear how the medications and treatments prescribed or recommended, are actually experienced by patients/caregivers/parents. By listening to the voices of the patient population for which these medications and treatments were designed to help, particularly in an audio format with no visual distractions, much information can be gleaned that could be quite valuable in developing more specific, targeted treatments and medications.

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The development of interview questions needs to be specific to the patient population for a particular disease in order to solicit adequate responses. This combined with actually hearing the human component in the voices of people talking about their experiences, often including much frustration and suffering, gives one a far more personal look at the lived experience of having this disease. The podcast model can better inform those listening that provide services to these populations more personal human insight and a shift in perception of what needs are imminent to this community
Check out the latest episode of TSC TALKS , Episode 10

 

The brave and articulate Renée L’Heureux talks to me about her experience of a TSC diagnosis at 39 weeks of pregnancy and the multitude of experiences and feelings that are a part of this particular TSC journey with her son Aaden, who at 10, is non-verbal.

I was blown away by Renee’s steady voice throughout, and her ability to continually make choices that reflect much maturity and strength in order to provide the best care for her son, despite her life circumstances. I truly hope other TSC Moms will give it a listen as it is much relevant for those just receiving a TSC diagnosis as well as for those more seasoned vets among us.

There is a lot of information to unpack and some highlights to listen for in particular are her experience with Vigabatrin and Infantile Spasms, the experience of getting approval and funding for brain surgery and the hurdles and barriers involved, ADHD symptoms, as well as impact on family, siblings, working with the school system to advocate for and support a child who is non-verbal, and much much more!

Renee hails from Winnipeg, Alberta but currently lives in Airdrie, Alberta.She discusses some of the differences in the Canadian healthcare system and education system. In light of our rather chaotic US politics lately, listeners take heed.Tune in this coming week for an episode with a school psychologist as well as a woman with TSC running Marine Corp Marathon for Team TSC, and on the ketogenic diet for seizure control… with lots more to come!

Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | Tagged , , | 1 Comment

TSC & Mental Health

Recently, I was driving back home to Massachusetts from Connecticut with my three daughters in the car.   My 22 year-old daughter moved into a shared living situation last April and this was the first trip we’d all made out to my mom’s since she moved out.  I happened to be the one with the mental health issues this time, and for some reason driving home at night on the mass pike was almost more than I could handle.  I was overcome with anxiety.  I am not sure what it was, lack of sleep, combined with a bracing awareness of what’d we’d all been thru together and now here we were with daughter #1 back in the car, using all her ASD related coping mechanisms which never used to bother me. This time, I was gripped with almost panic! Somehow, I grounded myself by staring at the Wegman’s truck directly in front of me and prayed.  Thankfully, we made it.

The neuropsychiatric aspects of a disease such as Tuberous Sclerosis Complex can be crippling.  What is TSC?  Click here.  After much-lived experience in dealing with TSC related mental health issues, also known as neuropsychiatric issues, as well as my own refractory and integrated mental health issues. I am quite familiar, almost comfortable discussing.   Due to the nature of TSC manifestations, particularly brain manifestations, these issues are almost unavoidable.  In fact,  I heard it tossed out by several different specialists, of the MD variety, that 90% of those diagnosed with TS, will be affected over the course of their lifetime by some level of neuropsychiatric issues.

Speaking of which, I was glad to attend some of the TAND (TSC Associated Neuropsychiatric Disorders)  seminars given by Petrus DeVries at the World TSC Conference last month in Dallas, TX. Dr. DeVries developed the TAND checklist.  This happens to be a phenomenal tool be given to all who receive a TSC diagnosis and then again screened at every office visit.  Beautiful!   I sat through the seminar with my jaw down around my feet, as it was almost a play by play guidebook, listing the multiple and many psych related issues with which we’ve dealt in the course of our family’s TSC challenges. I wish it was around when my kids were younger as I’ve mentioned, the mental health issues we’ve encountered both related directly to the neuropsychiatric manifestations of TSC as well as the fall out of managing these manifestations across the entire family, has been daunting.

It ain’t always easy to ask for mental health help over and over again and tell the story of TSC to unaware mental health professionals!!  I vehemently encourage anyone involved in managing a TSC diagnosis to put a premium on their own mental health and be screened as well as their loved ones with TSC.  Carry the TAND checklist everywhere you go

Parents, caregivers, other supporting players; If you don’t have your shit at least somewhat together as an individual and/or as a partner on this path of managing TSC, in whatever capacity, it behooves you to consider doing so. I don’t mean run right out and find a therapist, though that works too, at least make a mental note of this. The weight on relationships and a human, in general, can drive one not prepared in directions that one would never have imagined, and thus make it more difficult to be there for ourselves, and our loved ones with TSC. Talking about it out loud and knowing it is not all in your head and supporting each other are places to start.

It is this particular nuance of the overall cause of TSC awareness, that will be my personal platform for asking for contributions to theunnamed Marine Corp Marathon fundraiser I’m involved with as Team Ambassador. The carnage of my own PTSD and depression leaves me with a treatment program of proceeding one day at a time, staying grounded in the present and not allowing myself to be overtaken by past horrors, or projected future catastrophes.

As I’ve mentioned in past blogs, running as an outlet has been another tool that has been integral in my being able to manage the constant stress of dealing with uncertainty, that is TSC. I tend to bust out to run almost every day as I never know what potential crisis lurks in the shadows of the next 24 hours and having a good hard sweat under my belt, somehow helps tame the demons and wrangle the thought tangents that run rampant if left unchecked.  

I have asked for money for this cause in the past (Boston Marathon 2016) and have been the recipient of an outpouring of love and support over the last few years.  I’ve worked diligently to help my children with TSC gain the medical and psychological stability to each be able to overcome some incredible challenges to their physical and mental health and stand strong enough to start to make the journey to some level of independence.

I am grateful and pleased to report that they are all doing well! We have challenges every day in relation to some TSC related issue or some other life-related issue, but don’t we all have some kind of monumental challenge daily? I am often so inspired by others when I get the time to make a connection and hear that while not the same challenges, so many of us have overcome significant roadblocks to be able to thrive and contribute to their own realities, daily.

I am asking for your help. If you can support our fundraiser at this time, it would be wonderful. If you cannot, or already have, thank you and keep on praying for us. I would say faith has been an instrumental part of this journey for our family. The love from the local community, from behind the scenes, including social services, physicians/specialists, the Wachusett Regional School District, friends from past and present and of course, family and my soulmate. We couldn’t do any of this without you and let our cause be your cause as it is one that if a cure is found, has the potential to impact the outcomes for many other diseases and could truly bring much health and healing to many!  Thank you isn’t enough, so stay tuned.  I have a plan!

Click here:  http://giving.tsalliance.org/goto/MCM2018GOMental Health

 #mentalhealth #IAMTSC #TAND #Autism #Epilepsy #specialneedsparenting

 

Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, marathon training, medical conditions, parenting, special needs, tuberous sclerosis complex | Tagged , , , , , , , , | 1 Comment

#worldTSCconference 2018 and the Power of TSC Moms

FB_IMG_1532882506319I had a bit of a re-entry crash on Sunday when I got home to Rutland MA. I had attended my first ever World TSC Conference in Dallas TX for the past 4 days with my mother. If you don’t know about TSC, click here.  From what I learned, we are on the cutting edge of not only better diagnosis, treatments, and management of the disease but also finding a cure. The conference was ineffable, and I am forever moved and changed as a human being for having attended.  I echo the sentiments of so many in these TSC related forums in their awe, respect, and inspiration for the TS Alliance and the incredible momentous effort involved behind the scenes making it look smooth as butter.

I had made plans to come to the conference and applied and received a scholarship but had put it out of my mind. So much else had been going on in our lives that I absolutely couldn’t even think about the World TSC Conference way far away at the end of July.  Well, it came round and was almost time to go and suddenly, I didn’t want to.  I’ve been a TSC Mom for 22 years, and have 3 with TSC and I didn’t want to go. “I’m a freak”, I thought, among other fear-related ideas.   I dug in. I had decided in my obstinate, resistant way of thinking, that I had had enough of TSC, didn’t want to talk about it, think about it or hear about it any more for as long as I lived beyond what was necessary, and I was going to get a job and work and deal with the kids and their issues as needed, but really focus on my here and now.  

The weight of TSC has been monumental in our lifetimes, as I’ve shared repeatedly, and was more keenly aware than ever, the significance and difficulty of with what we’ve been dealing when my oldest with TSC, MaryEllen,  moved out in April to a shared living situation.  One kid leaves and the filing cabinet that represents their TSC journey partially goes with them. Suddenly a light comes on as to why it’s been such a struggle.  Anyway, I knew deep down, I had to go. So, with much encouragement from friends and family, I got on the plane with my mother and jetted off to the Big D.

Shortly after entering the breathtaking hotel, and seamlessly checking in despite having to update and change things related to my reservation down to the last minute (thanks Christen Bell), I sat down in our room and related to my mother that I wanted to go home. It once again felt like it was too much.  I was freaking. My mom left me to my doldrums and I knew I had to switch the narrative and go join these people and engage. Every part of me was resisting. While I may appear to have it all together, successful runner, TSC volunteer, my children with TSC doing pretty well, behind the scenes there has been great personal cost and it hasn’t ever been easy.  

Meeting people on FB and then meeting them in real life are entirely two different things. I came smack up against this in the hotel upon first arriving when I saw many many people I recognized from FB, knowing many of their personal stories, and they knew mine.  I wanted to hug them and at the same time also, run and hide, which, as I mentioned, I did for a bit.  It was too much at first.  Periodically, throughout the conference, when things became too much. I took breathers and went to the room to chill, cry, reorganize my emotional state, and venture out again.  It felt at times like I was reliving the diagnosis and manifestations of all three of my children with TSC as I sat through seminars and while it was a necessary process in order to properly engage, it was a bit rough on my ragged heart. 

I’m glad I pushed through.  It was amazing. I have never before had such an experience where everyone there had passion, vision, energy, and motivation cumulatively coming together for a mutual cause, and celebration of our successes as well as an honest look at where we can all do better.  The ego-driven nature of today’s society, online and otherwise, was refreshingly absent and all you had to do was walk up to anyone and ask, “What is your TSC story?” or “What is your TSC connection?” and immediately you were engaged in a conversation.

We flew out early Sunday morning and I actually had to utilize the vomit bag on the plane.  Gross. I know. That never has happened to me! As well, when we got back to my mother’s car at Logan Express in Framingham, she had a flat tire.  Not only once in the parking lot but then again once on the mass pike. Thankfully, we made it home in one piece, albeit a bit ragged and exhausted.  I was on edge and still wasn’t quite ready to go back to my responsibilities. Perhaps our tenacious trip home was a reminder to take the time to reflect on the experience to relate to you all.  

My son Jack with TSC, my ex-husband and boyfriend/partner who wants us to use the language “soulmate” (seriously, he said this), had had a “minor snafu” with Jack’s meds, and there was no clear knowledge of what had been taken when, and exactly what meds were taken.  I wanted to flip.  Despite having this all this set up before I left, I couldn’t account for every circumstance, nor expect everyone else to and sometimes that is just the way it goes, especially, dealing with the nature of uncertainty and TSC with which we must deal.  Jack was just fine, despite a day or two of sketchy medication management.

Of course, I wanted to start a rant in my head about no one but me being able to care properly for these kids and blah blah blah.  But I didn’t. Because it isn’t true and what I’ve learned, and if there’s any one thing I have to share from all this lived experience as a TSC parent, is I cannot do it alone, and these kids can learn to do much for themselves.  We all need much help from many, and that includes all the medical and psychological professionals, social workers, family members, soulmates, exes and their support people, and of course the TSC community. The list goes on and on. Being willing to risk asking for help and holding those from whom we’ve asked, accountable is another lesson to learn from. Email groups and FB pages and networking events such as this conference have solidly contributed to my ability to manage this experience.  

My partner took one look at the conference agenda and said, “you could have led every one of those sessions”.  Hah. Maybe. I honestly could have given input at least at all the ones related to living with TSC, relationships, siblings, and have experienced just about 80% of all the TSC manifestations and other related medical and psychological fall out related, and that is not an ego trip.  It is simply true. We have lived and learned and been lucky, unlucky and all the points in between in this journey. It was nice of him to notice and for me to have that level of support and understanding.  

In conclusion, if I didn’t connect with you, I’m chicken shit for missing the chance and apologize.  I saw many whom I recognized and still wasn’t able with which to connect. I was not always as approachable as I would have liked.  I could shoulda woulda coulda myself to death over all of it but I won’t because I think it was like this for everyone and is the nature of such an event.  Those who I did connect, thank you. It meant more than you realized.  You know who you are.

Two days out, my heart is full and I am now officially glad to be back as I slide into the work week and am uplifted, strengthened and buoyed by the energy and memories of this event and all of you TSC Moms out there who are doing your very best every single day, whether you feel like you are or not.  You are. It’s never easy, this journey is hard, but it’s worth it. I love you all. Seriously.

Jill

Posted in tuberous sclerosis complex | 6 Comments

Team TSC & The Marine Corp Marathon

MCM_LogoMy running pitch:  I can’t even begin to explain to you how much running has been an elemental coping mechanism in my journey with TSC.  For better or for worse, I have come to running as a corridor of freedom in a world that has often been complicated, chaotic, uncertain and downright scary.  Time running has often opened channels of thought that enabled me to find ways to manage the stresses of everyday life as a TSC parent.  I have been a TSC parent for the past 22 years. I am not here to share my martyrdom or sainthood or insanity, because you all have your own stories. I just am sharing to give you a glimpse of the depth of my inner motivation to help bring this fundraiser to fruition and see it be successful!  

I’ve been on a mission since 2012 to run a marathon for and with the TS Alliance to raise funds and awareness for Tuberous Sclerosis Complex.  Tuberous Sclerosis Complex is genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs, in some cases leading to significant health problems.  As you probably know, I have three children affected by this condition and since kicking booze in 2012, have wanted to use my running ability as a vehicle of some sort to contribute to the cause.

I reached out to the illustrious, late Dee Triemer at TS Alliance in 2012 to see if they were an official charity for the Boston Marathon.  Selfishly, I wanted to jump into the Boston Marathon without having to qualify, as those on fundraising teams do not have to meet race qualifying standards in another marathon prior to gaining admittance to Boston.  Dee, of course, got right back to me after doing some research and explained that the application process to become a charity had officially closed for the year.

I stowed the idea and kept running, eventually qualifying for Boston marathon 1as an individual and running in 2016.  I managed my own fundraiser, focused on the same idea, raising funds and awareness.  It was a success and I was somewhat content with my efforts. Somewhat content. Runners are essentially maniacs and soon enough, I was hankering for more.  So flash ahead to early 2017. I was reading my TS Alliance magazine, Perspectives, and saw a blurb recruiting runners for upcoming NYC Marathon! The first official Team TSC! My initial reaction was one of frustration.  Why hadn’t I known about this until now? Complete ego trip. Now the TS Alliance was officially doing marathons and I wanted to be a part, dammit!  While the timing was bad to get involved in that cause, I did not give up on wanting to be a part.

I had this foreshadowing that I would be running in the Marine Corp Marathon at some point in the near future. My little brother, Col. Jason Woodworth, and his family, will be moving to DC in July and my oldest son Woody, and his wife Chelsey (both runners) also live in DC, so there’s that.  Anyway, following my intuition, divine guidance or just wanting to see my family in October 2018, I emailed April Cooper, Director of Community Outreach Programs at TS Alliance, and lo and behold, we exchanged emails on the eve of the deadline for charities to apply for groups of entries in the upcoming 2018 race! However, the smallest number of spots we could apply for was 50. That meant we would have to get 50 people signed up to run for Team TSC and commit to fundraising a certain minimum dollar amount. Which I”ll tell you now, is a very reasonable $1000 bucks per entry.

I thought, of course “no probs! we can do that easily”, and I told April that I was completely confident we could get that many people to run for Team TSC.  She had her own connections to this race to motivate her to take the plunge, and we got the 50 spots to fill! Yayyy!! Then, Oh Wow!! and 50!! Oh Boy!!

Let’s just say I was jubilant to be a part of this new project and was ready to throw every ounce of energy I could spare to help pull this thing off.  Boy was I naive. Since then, I’ve learned what a huge effort behind the scenes this was going to involve, and at a volunteer level.  It was going to require more time and energy than I really had to spare, but as I’ve said, this is a calling. I was down with it.

What’s become apparent to me as we are going full steam ahead now, actively recruiting runners to run for our cause, is what a big ASK this really is and how far out of my comfort zone I was going to be catapulted.. And maybe that’s the lesson, for me. I’ve been reaching out to ask for help from just about every corner of the many chapters of my life in trying to help get TeamTSC off the ground. If you knew me when, or know me now, and I haven’t contacted you, watch out. It’s coming.  

As a part of our family’s journey with TSC and the multitudes of challenges these kids have faced, I let go of many of my old connections.  The cyclone of trauma and tragedy we all experienced in managing the manifestations of this condition for years and trying to survive had taken its toll on me personally and connections have fallen by the wayside in the process.  It has been so bleak at times, that all that seemed to matter, was what was relevant to survival in the immediate day. I’m happy to report that things have slowly gotten more stable, manageable and brighter, yet still, I resisted reconnecting with many past supports.  

I will add this for other TSC Moms, caregivers, anyone affected by a diagnosis such as TSC. There’s already an inherent level of vulnerability felt when one has to continually ask for help seemingly daily, in finding and securing the services and supports necessary in the management of this condition.  It can leave a caregiver feeling emotionally exhausted, marginalized and without a shred of interest in making any connections except with those in one’s immediate circle of supports. Financially, it can be unbearably stressful as it can be almost impossible to work outside the home, due to the sheer volume of necessary and often emergent appointments alone, not to mention medication management, IEP and ISP planning, and meeting, etc, I could list pages. It leaves one bereft, winded, beat, shut down, cut off and isolated.

Enter Team TSC. TeamTSC_Logo-FINALRegardless of prior mentioned inhibitors,  I have forced myself out of my comfort zone, almost daily, to reconnect with old connections, to put aside my own insecurities and vulnerabilities and push forward. Just as so many of us must, as TSC parents.  I’ve started going to fun runs at a local sneaker store, I’m training with old competitors and starting to get involved in some local running groups, I must have emailed the team with whom I am working at the TS alliance shamelessly, daily often, with ideas and suggestions. I’ve peppered some of my closest friends, not to mention my partner and kids, with long-winded conversations regarding my mission and I’ve gotten my son Jack, running daily which is a huge accomplishment for him. 

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Team TSC local!

So, friends, family, connections, readers far and wide, I’m here to thank you for already being a part of Team TSC because in so many ways, you are.  What I’m going to ask is that you spread the word about this incredible fundraiser that has the potential to blast open the doors on not only fundraising but awareness and connections around the country!  That is my vision for Team TSC.

If you are a runner, or were a runner, go to a gym or fitness club where there might be runners, consider posting our flyer and talking up this opportunity!  We already have 10 people, at last count, signed up to run but we want FIFTY. Fifty is nifty! We have a phenomenal Team at TS Alliance and my fellow Team Ambassador, Ryan Novotny, brings his legions of marathon racing and training as well as military experience to us to keep us on course!  A big team, sharing our stories and supporting each other as we train and fundraise for this grueling event, which could be the best, most broadening, out of your comfort zone experience you might ever have. And come on,if you’re involved or impacted by TSC already, you already are familiar with the out of the comfort zone feeling, so why not go one step further and help us out!!

 

Thanks for reading and here’s where to go for more info:

Team TSC-GO SIGN UP OR PASS ALONG:

 http://giving.tsalliance.org/site/PageNavigator/TeamTSCMCM.html

Email info:  Me, pjlacy6@gmail.com, crbnovotny@gmail.com

TS Alliance:  acooper@tsalliance.org

Tuberous Sclerosis Complex:  http://www.tsalliance.org/about-tsc/

Facebook page:  https://www.facebook.com/TeamTSCMCM2018/

To Donate:   http://giving.tsalliance.org/site/TR?px=1074502&fr_id=1526&pg=personal

 

Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, Infantile Spasms, marathon training, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex, Wheaton College | 2 Comments

Dear Wheaton College,

Hi Fellow Wheaties, class of ’88,

wheaton-college-signI got my 30 year college reunion magnet along with a written invitation in the mail recently, thank you very much! I slapped that beautiful magnet covered with a fall array of colors right up on my fridge, almost without even thinking about it.  Every time I get something from Wheaton College, my alma mater, aka, you guys….I get a bit of a low level angst and irritability, peppered with stabs of conscience. While I have been brushing these feelings aside over the years, and the weight of judgement and failure that can come with, I cannot seem to keep it under wraps one more minute. I hardly feel a Wheatie! More, a “fallen” or better yet, “falling” Wheatie. Your religious mission, “For Christ and his Kingdom” has been a life long thorn in my side.

I graduated from the good ole, blue and orange, described as the “ Harvard of evangelical schools”, having had a truly wonderful, life changing but also extremely limited and narrow college experience, I was bound and determined to stay on that high and narrow path of evangelical Christianity.  Hell, I even got married while I was there.  I tried and tried to follow the rules, as set out for me biblically, until I didn’t.  Until I fell.  Into divorce, twice, into the lovely charms of alcohol, and other forms of addiction, and well, all sorts of other segways off the beaten path, which have made this lifetime at times equal parts challenging beyond belief, but as well, delicious and worthwhile, in the wisdom gained from many falls and many awakenings. 

I so dearly want to join the bitter and disheartened bunch of us that couldn’t stay on that narrow tightrope. We who have fallen or are falling, who strayed from your course, at times resort to bitter backhanded discourse about how ridiculous you Wheaties are and how glad we are that “we” have evolved as humans to understand that there is more to faith then these continual reprisals of fear based reactionary events.  But. I can’t. Because what I’ve learned in my falling down life, is there is no “us” and “them”, there is no difference between us at all, despite our past clutching to the cause, Christian, non Christian, Buddhist, Hindi, really any set of religious beliefs. There is just clinging to belief and then there is faith.  Faith in the unknown, in uncertainty, in the willingness to admit we just don’t know for sure and that is A O.K.  Faith in the power of love, I pray, daily, minute by minute some days.

The college needs to know that the rest of us that don’t show up at the reunions and who may on occasion, slam Wheaton on social media, or elsewhere, and have somehow “fallen” into a life of which our dear old Wheaton establishment, would highly disapprove, are still alive!!  We’re still getting the refrigerator magnets, and letters and such, that we often resent.  We have much to offer!

As Jesus met the woman at the well, so must you, dear ole’ Wheaton, find a place for we “falling” Wheaties, who may in some way, embrace the path of Christianity, but do not see it as exclusive, but inclusive of a greater whole.  We who have accepted heaven in the here and now,  born again in each moment of choosing love over fear as the portal to a life with abundance now and ever after.  We who are falling and don’t care to get up.  It is your mission to find a place for us too, not because we need to come back, but because you need to come back and make room in your hearts as equals, sharers in the keys to the kingdom.  We are here too. Humans. 

I hope the reunion goes smoothly.  In love and faith,

Jill Woodworth, B.S. 1988

Posted in addiction, Buddhism, Wheaton College | Tagged , , | 5 Comments

What Tuberous Sclerosis Complex taught me about love

I had to go in my daughter’s room today. I found myself on my knees in tears. She is 22. She is moving out soon to shared living. It is a really great opportunity for her in what’s turned out to by quite a serendipitous match.  It is still so hard to let go. Walking into her room, I see the evidence of a 22 year old woman in about a 13 year old girl’s mind with schisms of brilliance, intertwined with many tiring days of multiple interruptions and continual mind grinding frustration on both our parts at our mutual lack of ability to make anything stick within a reasonable time frame, so she can forge her way more independently.

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It’s been tough to stay hopeful. It’s not her fault.  And maybe that’s just our history, our history influencing my vision of her.  My ex mother in law did say it would be a tough go. That was when she was about 11 months. My father, who was losing his mind at the time, even saw it, that she wouldn’t listen to me. At all. As her mother and truest believer in my daughter, I still believe. She’s been my raison d’etre and now I am handing her over, just like it almost never happened and they’re starting at square one with her.  The shared living match.  I’ve come to accept that she is who she is as much as she is carved from my heart of hearts, she has also been tough to care for, and I’m telling you, this past year of working with her on following rules, has been a humdinger.

But I digress.  I had to go into her room to look for hazards, a frequent part of a routine started because of multiple incidents of burns from curling irons, nail polish catastrophes. Fairly recently, we were in her room and discovered that she’d taken some stimulants that are prescribed for her brother.  It scared me a bit. She had never done anything that deliberate and that extreme. I came to understand, that it was mostly just so she could stay up late at night. It triggered memories of my past addict proclivities, and was a somewhat horrifying review of my own past behavior, and all it’s inherent harms and damages.  Ouch.

She loves to stay up late at night, and party.  Plain and simple. She gives her all every day and by about 8pm she is done.  D.O.N.E. But, she also likes to be alone in her room and do the kinds of things she enjoys and which comfort her.  This may involve high pitched squealing, singing, rocking, making videos, taking pictures, printing things on printer, if possible, maybe even cooking and showering. Boundary less.  I don’t know.  Anyway, she wanted more.  More time to have her own kind of fun, so she grabbed the pills

The pill escapade actually turned out to be a good thing because it got her on the escalated radar of the DDS and shared living seems to be the path.  While initially quite reticent, I have come to see that it might work. It’s a letting go on many different levels and I am happy for her and I hope for the best.  She has come so far from that little girl who had to spend 3 hrs a day, as a 3 year old in ABA therapy.  She was locked in a chair, working with a therapist extraordinaire, that cracked her code and had her conceding to finally use the English language. By then, she’d already made up her own language that involved over 100 words combined with the point and pull method of communication.

Her TSC diagnosis was the linchpin for the entire breakdown and recovery of our family’s hopes and dreams, shattered and repaired repeatedly. I am grateful for all the lessons of tough love TSC has taught,  painful, unfair, ugly as hell. We could not have survived had we not found new lenses daily, to see the gifts of this ongoing daily struggle dealing with what this disease represents and reflects so poignantly.  That with which our own country and the world at large is faced.

We must not turn away, even on the darkest days, when everything seems black. We must sit in our anger, pain and discomfort for long enough to understand that we have the power, even if only to scream ”help” at the top of our lungs, fall to our knees in despair and confusion, and accept that this too shall pass, light will come. And it has.

So off she goes, with much fear and trepidation, I surrender her to the path, whatever path that may be for her.  We have tried our best as mother and daughter, as mother and daughter’s do, and a deep love will always connect us. As tears stream down my face, and I think of how quiet it will be when she leaves, I know the time has come.  Onward sweet Mary Ellen, it’s your turn!  Go live. I love you.

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Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 5 Comments

Protected: The Personal Pitfalls of Chronic Disease (TSC) meeting PTSD

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Posted in #IAMTSC, addiction, autism spectrum disorder, Buddhism, epilepsy, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex | Tagged

Precious Moments~by JD Brigham

Spear_2299So, funny story. Stop me if you’ve heard this one. Some of you have. When my boy was about 8 months old, about that time children start to mimic what you say. You say “Dah Dah” he says in his 8 month old angelic voice, “dah dah”. Lovely. It was just coming up on his 1st birthday, I think. Maybe 2nd. I thought they talked before 2. Oh, and there’s a blow dryer powered Santa. He comes back around later. I digress.

So it’s the day of a crazy storm. We musta got 10? And that was just that morning. I headed out to get the kid from daycare. We gets his boots on and hugs goodbye, and down the road we go. Woo hoo. It was then I saw her.

She was waiting to pull out. Maybe she lived there. Maybe she just robbed it. (Her car was nice for a robber, but maybe she was good at it.) She looked me square in the eyes and pulled out in front of me.

I panic. I’m coming in -hot-. I’ve been here before. I know what’s going to happen. The sound of crunching metal. Any second. Any second…. Any second?

Holy shit, thank you anti lock brakes and aggressive tread mud and snows. I had 1/2 an inch to spare.

As I’m shaking it off I look and she’s looking at me in the rear view mirror. Perhaps wondering how I managed to avoid turning her trunk into an eggo. So, I very carefully mouthed out to her exactly the impression that kind of driving has on someone bringing their very small child home from daycare in a snowstorm.

Fucking [badword]

(The badword rhymes with what football teams typically do on fourth down when they are too far away to kick a field goal. I’m not proud of it. I used to partake of that word profusely, but have learned that it’s not very nice and has bad connotations. Ignorance is no excuse and I will beg forgiveness some other day. Point is, I knew how bad that word is when I used it on her, making it even more insulting in my opinion. Which is why I used it.)

And then what do I hear from the back seat? He even got the emotion right. A beautiful, angelic, 8 month old “Fucking [BADWORD]!” Turns out I did a little more than mouth it. At once I start laughing. It’s kinda funny to hear that, all angry, from an angelic little person voice.

Then I realized the implications. It would have been clear to anyone close to the situation that he did not learn that at day care. Nor would it be something he’d pick up from his mother. Nosirrree. There was only once place he’d learn that foul shit.

Daddy. And he’s laughing. Rut Roh Raggy.

I got about 4 deep into the ways his mother would kill me, all slow and painful. One involved vise grips. I know right? Where’d that come from. I don’t know.

I panic again. That’s twice in the space of 10 or 15 seconds. Life happens fast. And I am scrambling. I’m that kid in A Christmas Story when his mom shoves soap in his mouth and wants to know where he learned the F bomb. (The mother of all swears? I beg to differ.) I am in a hole and there is No. Way. Out. What do I do what do I do what do I do what do I do?

Then I see floopy gyrating needs-methadone blow dryer Santa. And I say “Look Buddy! It’s Santa! Have you been good?” And he says, “Jakey good SANTA!”

(Is that light I see? Don’t kid yourself bub. You’re dead, you just don’t know it yet. )

“Look at the sun! Pretty in the trees, right buddy?” “Pretty in TREES.”

(Is it really real? I might live to see 35 after all.)

Then I broke into “We Wish You a Merry Christmas” and he tried his best and bobbed his head.

(35, here we come.)

He never said it again, at least not in front of me. And it was a merry Christmas. Everyone.

The End.

Posted in parenting | 2 Comments