The Fight for CBD

I started the conversation for something still not available to NMDARE patients in NEw York. CBD. The non-hallucinogenic cannabanoid that offers a relaxing effect as well as promotes the annihilation of tumor growth, and tumor blood supply.

Jason was on Haldol. A well known drug with a very high dispensing threshold. His behavior limited our options. The Hulk needs to be held back with something. He stepped up from zyprexa to Haldol. Haldol caused him Parkinson's like effects that required him to also be put on Cogentin.

I wasn't happy about this. But there was little choice I had. I am not a pharmacist. I can only go by what I am offered and fight down from there. I did my own research and found CBD. I am advocating for it. Working on a major  step toward it and I always feel like Noah back in the days of the ark. With doctors and a team that want to stick with what they know and what someone else proved worked. They are afraid. Hesitant. Unwilling to make a commitment like me towards advocating it. It's illegal still in New York and NMDARE is not on the approved list to have it. But I can't sit idle. I can't wait for someone else to be the pioneer. I found something that may be able to change the world for sufferers of this horrific disease. I found something that may help Jason. I am going to ride this bitch until the wheels fall off. I won't be in JAMA but maybe the doctors will. I'll take the risk and the fall of it fails. But I will do absolutely anything to try to help Jason. Anything.

The Walking Dead

After Jason's birthday I couldn't talk or write much. I was sad. Jason turned 19 sedated and zombie like in his hospital room. A smile came thru here and there with a lucid moment. Nothing really normal. The Parkinson's like effects of his medication affected him thru out the day. It broke my heart more to watch him tremble. I needed a minute because that dark well of hurt and depression kept begging me to take a dip.

I prayed a lot. Thanked God for his life and forced myself to be grateful for everything.

I felt like The Walking Dead...

Ever watch the show? And you see these little pocket of survivors and you try to figure out yourself how you will do it? Then like when they found the town and they met more people, good people- that sigh of relief that enveloped us all?

There's a group. A support group. A group of people with exactly what Jason has, filled with people with similar experiences or the exact same stories. The group is over 2000 strong with these fearless and fearful people all looking for answers, questions or just comfort.

I started this blog because I couldn't find anything. Nothing relatable. Nothing useful that showed the human side of this thing. So far I had only met one other mom who knew what this pain was. And as much as it breaks my heart to know this, I have a little comfort now. There are others out there, at different points of the disease.

I found a town.

They are all on Facebook.

https://www.facebook.com/groups/ANTINMDARE

Try To Do Better

I had my meeting with Columbia today. No lawyers involved. No lump sum being put in my bank acct. Not looking for money or notoriety.

I was looking to be human. My eyes hurt, my chest hurt. Dredging up the muddy parts of this crazy life of 11 months and 1 day- My heart hurts. I relived moments i wanted to forget. Moments i promised myself i would not have to

Go back to. I want to ball up in the fetal position and cry. But I won't. I can see the GIF in my mind's eye, "Aint nobody got time for that!"

You are exceptional, they tell me.

You are amazing, they tell me.

When you hear things like that really good feelings are supposed to envelope you and this euphoria should spread.

It doesn't.

I dont feel any of that.

No matter how many teary-eyed empathetic people tell me this i feel broken. I feel like crap. I miss my son how he was and I just want him back.

I spoke to aome Columbia Chiefs, wio took time out of their day to speak to me. People who listened and implemented changes and worked on the things that went wrong while acknowledging what went right. Parents like me qho have no idea how i have done it. And praise me

For not showing where I cracked. I wanted to be fair to those that I have crossed paths with that were not so great because we are all human. As time has helped smooth over some of the hurt and pain, the forgiveness I seek from God for all my offenses I want to give to others because we all deserve it.

We all need a chance to make things right. I hope that those i spoke of know this. I didn't want a witch hunt or a beheading.

I just want change.

For me.

For Jason.

For the Jason's yet to come.

Relapse

In the middle of recovery when things were finally looking better, the Hulk kept showing up. Not calm Brooding Hulk. The kind of Hulk that would pick up Loki and swing him around real Quick. The doctor's always cry disease, but in my heart I didn't want to believe it. I gave in and did everything they said and still he is doing bad?!?! I gave him the harshest chemo for this shit-and STILL the disease makes gains on him??? 

I stayed int the hospital with him to get a lumbar puncture, IVIG and once given truth to the whispers of relapse: Retuxamab.

Jason's B cells are up. He has 12. For a total of 1% B cells. He got retuxamab.

It's like...

I wish...

Perhaps the words are caught in between my fingers and my throat...

When the doctor first said it. I needed a moment to let it register. Mechanically I consented to do whatever needed to be done to counter a relapse but emotionally I am just caught. Deer in headlights. Hypnotized by bad news on top

Of bad news.  At least if he tagged 100% before this happened I would have a little more sunshine reserved for this rainy day. But he didn't get up to it yet. We didn't burn the last bout of the disease entirely out of him Before this happened.

How much longer? 

Bitching and Moaning

When someone bitches about having a rough night's sleep in their bed. Please show them the below picture. This is where I slept last night. 

No More Tears

I don't cry anymore. My body hurts, there are aches and pains and it's ugly. So American Horror Story horrifically ugly. But that emotion to bring the tears doesn't shine thru anymore. 

I was home last night, trying to relax because the crazy with Jason has been about all weekend. But I felt it. Bruce Banner was there all day. I just felt the Hulk would come, when I got the call that he was being difficult I knew I had to stay the night. 

2AM the Hulk wanted to go catch the Megabus. I had to subdue him and the scuffle that ensued broke a very expensive bra and injured my little pinky. I always get asked if I am ok. You just watch me dodge a fist fight and hold down the exorcist and I guess asking if I am hungry or want a cup of coffee is not appropriate. The appropriate question is , "are you ok?" and I'm used to calmly and mechanically answering "yes". I don't cry, my heart doesn't race like before. The adrenaline is there in the scuffle and gone when it's over. The animal I fought with wasn't my son. The animal that tried to kick and punch and bite is not the boy I raised. It's the encephalitis riddled zombie he has become. He's essentially a real life version of the "Walking Dead's Penny". But she only comes into him in spurts and in real life I have the certainty of him being better. 

But I most certainly am The Governor. Choosing to be his only handler because he is mine and no one else would

Understand. 

The fit left almost as fast as it came. A PRN later he was getting his regular meds. His nurse afraid of him. He never touched her and she wasn't involved in the scuffle but seeing was enough. She was scared to give the meds and I helped her. Then the Hulk decided to show again. 

After 20 more minutes and his aide's help it was over, he got injected with another PRN anyway and he chilled out.

Obviously I got no sleep. I came home dressed the babies dropped them off at daycare and headed into work. Ready to field all the OMG questions my face will merit. I am tired. Like my soul is tired. Thankfully the questions didn't come. Not sure if it's an astute means of letting me get thru work without a field of questions or a general population of people who don't really care or want to hear about it. Regardless the reason, I am grateful. Grateful no one makes me live the story over and over. 

We had a bad day. Now we have to shrug it off and see what we can do to make better preparation for the days to come.

Maybe that's why I don't cry anymore. I know this is only temporary...

A Mother's Love

A living death is the way to describe it. To watch your child day in and day out in the condition. Never knowing when or how it will end. There are all these stories and all this promise, and nothing. Nothing that you recognize as peace ever really come to fruition. So you pray and you hope and you cry. Until one day you can't cry anymore. You accept the broken, and concede to be beaten. And you take your lickings as they come because that is the only certain thing, and you are used to it.

Jason needs a lumbar puncture. My job needs someone there. My kids need a mom. My husband needs a wife. 

No matter how well I pay or how much I beg for help, the people who I expect to help me won't and the courtesy of strangers carries me through more often then not. 

This disease has made my life a fucking mess. It won't succeed until I am fucking homeless.

It Never Fails

After I post something good, the ugly comes. Almost like the cosmos thinks we are having too much fun. Jason was maniacal last night. I had to drive like a bat out of hell to subdue him. I'm tired. I want this over already.

A Picture Worth A Thousand Words

Aesthetically he is close to 90%. We still have work today... But through God's Grace and Mercy this is how far we have come.

Progress

Yes, that is Jason and his friend, playing XBox

Broken-hearted

The little things are what make your heart break the hardest. For the first time since I can remember I am Not buying Jason school supplies. I am shopping now for the little ones. Instinctively I keep going for loose leaf and college ruled items. 

The babies don't need that in preschool and Kindergarten.

I'm crying in the crayon section. Trying to focus, and wiping tears from underneath my aviators.

I miss my boy.