Change in coming...

Wednesday, May 2, 2018

I did an interview last week with our local newspaper about my fight with the school not allowing Paloma's cannabis.  I hate putting myself and especially my child in the spotlight.   I had to do it in Utah and it was horrendous.  In Utah, they tried to make me into their spokesperson and I am not well spoken.  I get nervous and forget what I'm supposed to say. When I had to go up before lawmakers in the Capitol to plead our case I totally blanked, and when they failed to pass our bill I took it personally. If only I could have given an eloquent speech like some of the other cannabis moms out there who have changed laws (I'm thinking Paige Figi)....

So I was reluctant to speak out here but I'm glad I did.  I knew it would force lawmakers to talk about it and I knew there were other parents out there like us who are facing the same thing.  I've been in contact with several people since the article came out, some in the cannabis industry, other parents, lawyers who have all stepped up and said they are here to help.  It's going to be a tough fight.  Ultimately, I would love to see a bill that allows school nurses to administer cannabis at school just like any other med.  We're going to need teachers and school nurses speaking out on our behalf to pass it.  It won't be easy.  New Mexico is not Colorado, I realize that.  I've told every lawmaker I've talked with that allowing minors to have access to medical marijuana and then not allowing a way for them to attend school with that medicine is cruel, unfair and a punishment they don't deserve.

Any time you put yourself you can't be too surprised at the criticism.  I knew it would come, but it stings just the same.  Just a few of the comments the story received online said that I was selfish, how dare I expect the school to give my kid a federally illegal substance.  One said something to the effect that kids like these shouldn't even be allowed in school, school isn't capable of handling severe kids. WTF?  One of my personal favorites by some dick who deleted it after I schooled his ass said, "I'm willing to bet seizure meds work just as good or better than cannabis for this kid."  Really?? Did you not read about what hell our life was before cannabis, the constant 911 calls, intubations, life flights, near death experiences.  I will never go back to the hell of benzos, not even if it means she can go to school.

Our next step is doing more media (kill me)  and lobbying (also kill me) and try and get it heard before the committee when the legislative session starts.

Wish me luck.

Here is the article if you care to read it.


Tuesday, April 24, 2018

My battle with the school system here in New Mexico to allow my daughter's cannabis on school grounds is never ending it seams.  I have resolved myself to the fact that homeschool is our best option at this point, but I'm still fighting because of the injustice of the situation.  When Paloma's neurologist suggested we try Epidiolex this summer when it becomes available, I reluctantly agreed because I thought it might be a way to change the school's no cannabis policy.  Like a lot of other parents in this community, I'm not a fan of Epidiolex. They lobbied hard here in NM last year to try and make CBD oil illegal.  At the time we were using Haleigh's Hope and if their bill had passed it would have been illegal to bring it into the state.  Thankfully, the bill failed but I've heard rumors they will be back.

I thought if I let the school know we would  be starting this new soon to be FDA approved drug they would certainly have to amend their cannabis policy.  I spoke with the health department at school yesterday and let them know we would be starting Epidiolex and asked them to change their policy to allow it on school grounds. I waited for a reply and held my breath.  The lady I've been going back and forth with for a year responded quickly and said, no need to change anything, if it's FDA approved we will treat it like any other medicine.

This was my response,

Just so I'm clear here, you're saying this new cannabis oil will be allowed on school grounds because of it's FDA approval but a slightly different oil that she takes to stop her seizures is still not allowed and I still need to be on campus with her at all times in case she has a seizure and then I need to pick up her seizing forty pound body, walk all the way across school grounds to the off campus parking lot before I can dose her with her medicine.

I use run on sentences when I'm pissed.

My next stop is going to the media. It won't do anything but maybe it can gather some support for the cause....

Four years after the diagnosis

Wednesday, April 11, 2018

I got an email from a new Dravet mother the other day. She thanked me for my blog and I thought she might say it helped her, then said it scared the hell out of her.  It wasn't my intention when I started writing this blog to scare anyone but mainly to document our journey and give a little glimmer of hope.  At the time, I found very few positive stories about Dravet Syndrome. So to that mom, I'm sorry I scared you, but those first few years were brutal and there's no way to sugar coat it. It scares me reading back on it. I honestly don't know how I survived.

Those first few years after Paloma was born, I was obsessed with Dravet Syndrome.  Obsessed with controlling seizures, obsessed with trying to cure Paloma.  Our world revolved around the next seizure.  There was very little sleep, what seemed like a monthly visit to the ER, life flights, intubations, endless rescue meds, doctors appointments, therapies, special diets.  It was hard to think of much else. Since our ability to use THC as a rescue medication things have turned around considerably.  I no longer fear seizures. They happen all the time.  They happen in the store, at school, when its too hot etc.  The other day Paloma had a seizure in Sprouts.  She was wearing her purple cape so I laid her out on the floor right in the middle of the store.  I gave her THC and waited for it to be over.  People asked if they could help and I said no I had it handled. Afterwords, I carried her in one arm and checked out my stuff with the other.  It sucked, but it wasn't a big deal.  It's just our normal life.

Those first few years I was so scared of going out of the house. Terrified of seizures out in public. Thankfully, those days are over. We've joined a homeschool co-op and we are out of the house most days now.

Our biggest issue now is trying to work on behavior.  We are starting speech and horse therapy soon and we are on the wait list for an autism screening which would open up a lot of resources.

So to those newly diagnosed who might be reading, it does get easier in some ways, or maybe you just get used to it and it becomes less heartbreaking.  Controlling the scary status seizures was our biggest turnaround.  It gave me a sense of security I hadn't had since before the seizures started.  I know that wherever we go I have a something that works quickly and won't maker her stop breathing or make her become addicted. Praise the lord for THC!

On Writing

Thursday, December 21, 2017

After I finished my writing degree over the summer, I started sending off the work I'd written in my classes.  The rejection letters have been slowly streaming in since then.  Yes, it means I'm trying but it also means my writing is not worthy of being published.  I sent off to big names as well as online journals that I thought would be a good fit.  My latest rejection letter said, with all the issues I wrote about it in my essay, it lost its focus.  Feels kinda like my life. I knew when I sent it off it wasn't ready, but I wanted to be rid of it.  It was dark, really dark and I wanted it out of my system. So I was relieved a little when it was rejected. I wouldn't have shared it with anyone.

I've been thinking about why I want to write in the first place.  I've always kept a journal and found pleasure in writing. The recent rejection letters have me wondering if maybe I should just keep my writing to myself and not seek outside approval.

Recently, when I wrote something about Paloma, I received a lot of comments that went something along the lines of, wow that's painful thanks for reminding me to appreciate my healthy kids etc.

I wanted to tell those people I didn't write it for them so they could feel better about their life.  I wrote it for myself, for other mothers living similar realities and not knowing how they're going to make it through another day.

My friend suggested I start writing fiction so I've started a few things but fiction is much harder than writing about my own life.  But I'm tired of writing about my life.  I'm still in the thick of it.  Maybe when I'm older and hopefully wiser I can offer something that isn't so dark it scares me.

under the influence

Thursday, November 16, 2017

Why don't you just use Versed at school, Paloma's neurologist says to me at her last appointment?  This after I've told her several times about Paloma's progress since moving to New Mexico.  I've told her how before we moved here we were using 20 plus mg of versed several times a month and averaging calling 911 every other month when the Versed didn't work. How the Versed caused aggression and caused her oxygen levels to drop lower than I safely felt comfortable caring for her at home.

I wanted to say, trust me lady, I wish THC wasn't the only thing that seems to stop her seizures safety with no side effects.  Instead, I just said, yeah I will think about it.  The truth is we've only had to call 911 once since we've lived here and that's when Paloma had a seizure at school and I had to drive home before administering THC (it has to be given very quickly to work.)  She is now going longer between seizures, she's for the most part able to enjoy a "normal" life now.  We are no longer scared to go anywhere for fear of having to call 911.  The neurologist never seems to be impressed by this improvement.

I've been going back and forth with the school for months.  First, they gave me the spiel about cannabis being federally illegal and therefore cannot be on school grounds because they could lose their federal funding.  Now they are giving me the school's drug-free policy.  The latest policy they've sent me says no student can be "under the influence of cannabis" on school grounds. The lawyer I've been talking to told me not to get in a back forth email with them but I emailed back and said something along the lines of Paloma being constantly "under the influence" of cannabis and needing more clarification on what this means for her. They are currently scrambling to give me an answer.

In the last year, I've talked with countless local cannabis activist, senators, other cannabis parents.  They all said they would love to help me fight this issue, but when push comes to shove no one is ever available to help me.

I reached out to a disability lawyer who has very little knowledge of cannabis laws.  A push to make the school pay for private school and a private nurse is an option but I think I've made up my mind to homeschool.

The lawyer said the school will clap and cheer when I tell them I'm homeschooling.  They don't want to deal with my kid. There's no easy answer.  The school nurse told me she doesn't understand why her medicine cant be locked up just like the other kid's life-saving medicine. I can only hope that someday this will not be an issue for our kids, that they wouldn't have to choose between taking a horrible drug that makes them stop breathing or homeschooling.

Friday, October 13, 2017

Wrote something again over at The Ma Books blog....


Thursday, August 17, 2017

A couple of months ago I jumped out of bed to let the chickens out and before I got out of the back door, I fainted.  It was a terrifying experience, which probably lasted no more than a few seconds.  I woke up with my David standing over me asking if I was having a seizure.  I didn't know this until I looked up videos of people fainting, but it can cause seizure like movements.  I slept the rest of the day and thought it was just a fluke.  The next day I took Paloma to school and as I was sitting in the classroom  I felt as though I was going to faint again.  The thought of fainting in front of all the kids and teachers sent me into a pretty, awful panic attack.  911 was called, I spent the entire day in the same ER that Paloma had been in the week before for an hour long seizure.  Everything checked out fine. They offered Ativan. I refused and went home.  

That week I started having symptoms like fatigue, head pressure, mental fog, dizziness, feeling like my blood sugar was dropping, insomnia, blurry vision, headaches, neck pain, faintness of breath, anxiety. Some days I could barely get up in the morning.  

I found a primary care doctor and went in to see her thinking I might have a brain tumor.  She said everything checked out fine but thought from my description I'd had a seizure and wanted me to see a Neurologist. I assured her I know what a seizure is and I did not have one.  But, I wanted to be sure I it wasn't something serious so I agreed to the MRI.  Everything was normal. She told me it was just anxiety and gave me a prescription for Zoloft. Thinking I might be going crazy I took it for two days before coming to my senses and realizing I'm not going crazy and mild altering drugs are the last thing I need.  

Even though I was exhausted I knew it would once again be up to me to figure out what was wrong with me.  Paloma's first neurologist wrote me off as a paranoid mom, told me she would outgrow her seizures and even told me flat out there was no way she had Dravet Syndrome.  I'm no stranger to doing to my own research.  It was a month later that I finally figured out I had adrenal fatigue.  I called my doctor back to tell her I finally figured out what was wrong with me and asked her if would she order the labs to confirm my cortisol levels were low.  She refused but instead offered me a Cardiologist referral.  So I paid for my own lab work which did show that my cortisol is basically a flat line.  After years of being in flight or fight mode my body has gone to shit.  

Years of too much coffee and too much wine, a four year old that has yet to ever sleep through the night, the constant ER, doctor, specialist visits, the constant panic anytime anyone in the house yells, "Seizure!!" Then the past six months of the daily onslaught of terrible news about the latest that our  POS, orange leader has done.  You can only take so much.  

I've since found a Chinese medicine doctor to help me but it's not cheap and it's not a quick fix.  I've already made radical changes to my lifestyle and I can only hope that it's enough.  I've not been a very good wife, mother, friend, housekeeper, pet owner, writer or much anything these last few months.  I only have a limited amount of energy and so I'm trying to pour into myself for the first time in a long time.  

The Ma Books

Tuesday, June 27, 2017

A little something I wrote for the blog, The Ma Books.  This blog is so beautiful I'm honored to have something I wrote present in it's spaces.

The Desert is the Country of Madness

Sunday, June 18, 2017

I tried my hand at WordPress. I hated it. I'm looking forward to being back here blogging again and keeping up with all my favorite blogs.  I took a little detour to finish my degree and thankfully I'm only a Shakespeare paper away from being finished.

It's been hot here. Too hot for me and too hot for Paloma.  We spend the afternoons indoors and wait for dusk before going outside. I go to school with her in the mornings.  I sit in the small trailer, trying to read, trying to ignore the 12 plus special needs preschoolers running around screaming, trying to forget the heat as I hear the swamp cooler above me struggle too.  More often than not I'm mistaken for a teacher or helper by one of the kids or like last week I intervene when the teacher is busy. I try to read but I'm always forced to put down my book mid sentence because my crazy inability to not focus on my kid's every move, apparently also happens with other people's kids. Just last week I picked up a non verbal little girl as she fell off the playground equipment, unable to cry or tell me what hurt, I held her for a bit until the teacher noticed.  I caught a kid behind the teacher's desk with scissors and a glare in his eye, scanning the room for just the right object to cut. I ran after a little girl who ran right out of the class while no one else was watching.

This is not to criticize the teachers. They are saints. Paloma's teacher works at Walmart after teaching all day to make ends meet. Walmart!  I feel like I need a drink every time I leave the class. These are crazy times we are living in.

I knew all along that New Mexico had it's issues. It's a poor state which always comes in the bottom for education.  Our Republican governor recently made several cuts to already stressed, underfunded system.

My older two kids go to my dream, hippy school.  They spend a good part of the day outside playing. They garden and do yoga as part of their curriculum.  They practice peaceful conflict resolution and no joke when DT was elected president they had a counselor go around to each classroom to comfort students because they were so upset.  The kids go on nature hikes every week and there are frequently family potlucks. The teachers seem to float across the campus, glowing and happy like they're fulfilling their dreams. It's dreamy and ideal. For my older two that is. I know Paloma will never be able to go there.  There's no money for an aide for her. She doesn't do well in heat or being outside for long periods.  Our only option is a chaotic, hot trailer hidden in  the back of the school with teachers who are over worked and underpaid and me going with her. Or I home-school.

So what are we to do?  I don't know the answer yet. We've talked about moving yet again. Maybe to Washington or Oregon, places where cannabis patients can bring their oil to school so I wouldn't have to go with her. The thought of leaving this place I love so dearly hurts but maybe it's not for the best.

I made a friend today at the UU church. She is a special needs mama too and she's the first friend I've made since we've been here. Maybe it's a sign to stay?


Friday, March 24, 2017

Paloma starts school next week.  I started the special needs preschool placement process in May while still in Utah. I had visions of dropping Paloma off at school while I went off to yoga or sat in my car and read a book uninterrupted. We've had to learn many lessons the hard way the past few years, and it seems like navigating the public school system with a disabled child will be no different.  I'm no stranger to IEP meetings, as my oldest has a brain injury, but her needs have always been very minimal and for the most part, schools have been happy to accommodate her. 

A long overdue update...

Thursday, March 2, 2017

I'm on break from school this week so I thought I would do an actual Dravet Syndrome update for anyone that actually reads this thing still.  I vividly remember trying to find any glimmer of hope that first year of seizures and how much Charlotte's Figi's story inspired me. I've been taking a much needed social media break and it's been very peaceful.  I briefly look at Instagram in the morning and have my  Facebook deactivated unless I need to ask something in one of my groups.  I realized I haven't done an actual update on Paloma since we moved.  (Please excuse my poor writing skills today. I've been writing papers for three months straight. I'm exhausted.) 

This past summer

We moved from Utah to New Mexico in June for several reasons but mostly because we needed access to legalized medical cannabis.  We fought to have it passed there but we were no match for the corrupt Mormon church coming out against the bill.  I don't miss Mormon land much to say the least.  

I immediately got Paloma's cannabis card when we arrived in Albuquerque. The law here on paper looks really great. I figured we'd easily stroll into any of the local dispensaries and get what we needed and all would be well with the world.  Of course it never quite works out like that.  After visiting nearly every dispensary between here and Santa Fe I realized no one knew anything about pediatric dosing and I was pretty much on my own (again). Armed with an empty bottle of high thc oil I'd been using to stop seizures, I asked around if anyone had anything similar or if they could make it for me.  Almost every place in town turned me away telling me they didn't know where to begin making this specific oil.  This thc oil by the way works to stop seizures 75% of the time.  On the rare occasion I do have to give nasal versed, I have to give a small amount. Before we left Utah we were up to 20 mgs and having to call 911 at least every other month.  The paramedics knew us all very well.  So I found one dispensary who agreed to make this thc oil for me from a specific strain called Blue Dream.  They first refused but a mutual cannabis friend who knows way more than I do on the subject called them on my behalf to tell them what I needed and how to make it.  It would be ready a week later they said.  Well two months later I finally got my hands on it and it was still in the sticky form (they didn't bother mixing it in MCT oil like I'd requested and they couldn't even tell me how many mg of thc was in it or how it was extracted. No lab reports in sight.  I bought it knowing I wouldn't be able to give it to her.  

We've tried several strains of local cbd without success and I finally gave up on getting what we needed here.  Six months ago I decided to try Haleigh's Hope which ships legally out of Colorado.  Paloma has responded well to it.  Her seizures are still occurring about once a week and sometimes once every two weeks but they are normally small seizures that stop on their own now.  I still use thc for rescue by placing a few drops in her cheek.  I have to get very creative in order to obtain the thc oil (don't ask)  

In most areas she is still on track developmentally. She needs help in maintaining attention so she will be starting speech therapy soon.  Our biggest obstacle right now is school.  We bought a house walking distance to a good school with a special needs preschool program.  I knew cannabis would be an issue, but I hoped since we are close I could walk over and give her cannabis when she has a seizure.  The school is refusing to let me dose her at school. They cannot understand why I will not consent to just using versed at school.  I've tried to present them with her progress these last few months. I have no doubt that her seizures are stopping on their own now because she has not been getting the versed at the same dose as before.  Versed makes her breathing get dangerously low, but they are worried about me running over and putting a few drops of oil in her cheek to stop a seizure?  We have an IEP meeting scheduled next week and honestly I don't know what will happen. I'm tired of fighting so part of me wants to just keep her home.  But I feel cheated and defeated.  She would love school and with the right circumstances, mainly a one on one aid, I think she would thrive.  

I have no regrets moving.  It's been somewhat lonely having to start over all again.  We still don't know a lot of people but it always takes me about a year to feel fully settled in a place. Paloma has improved so much that we almost feel normal again.  I go to the store and the park without fearing the worst most days.  Maybe it's the peace that comes with time too. I don't fear big seizures in public anymore.  I know if she has one I can pull out my legal cannabis and give it to her.  It's such a relief knowing I can medicate her without fear of being thrown in jail (for now anyway. Who knows what will happen with cannabis in the next four years, God help us.)   

A recent selfie