roma★
Mike Driver
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Andulka
Sweet Seals For You, Always
Origami Around
macklin celebrini has autism
Cosmic Funnies
One Nice Bug Per Day
art blog(derogatory)
Kiana Khansmith
noise dept.
d e v o n
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if i look back, i am lost
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we're not kids anymore.
trying on a metaphor
Aqua Utopia｜海の底で記憶を紡ぐ
taylor price
seen from Philippines
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@beckygaunt
Express Scripts is a soul sucking parasite
Express Scripts is a soul sucking parasite that is no doubt responsible for causing worsening illness and probably even deaths. Want my vote, politicians? Stop pharmacy benefit managers (PBMs). Are they telling you they’re working on making improvements? You know they’re lying, right? I can prove it because I wrote this 11 years ago: How is Accredo Pharmacy getting away with this? This is my…
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Why is Sen. Ben Watson turning his back on Georgia's cannabis patients?
Why is Sen. Ben Watson turning his back on Georgia’s cannabis patients?
Let’s start with the TL;DR. If you read no further, check out this video created by a supporter. I’m over it. My enthusiasm and January gung ho attitude of years past are long gone. 2017 is the fourth legislative session in which we will continue to fight for medical cannabis in Georgia. I’ll be honest. Before my son’s seizures and getting involved in cannabis advocacy, I didn’t pay much…
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Are You Sick? Don't Put My Kid in the Hospital.
Are You Sick? Don’t Put My Kid in the Hospital.
I’m not really sure why I’m writing this. The people who actually need to read it either won’t…or will dismiss it immediately after they do. But I’m going to say it anyway because your family, job and schedule are not more important than mine or anyone else’s. And maybe a Motrin Mom or a Motrin Dad will actually listen. Don’t. Send. Your. Kid. To. School. Sick. Colds are a pain. Symptoms can last…
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Are you handicapped? No? THEN MOVE.
Are you handicapped? No? THEN MOVE.
I got really insanely angry this morning. I attended the sneak peak at my son’s elementary school in Cobb County and was unable to park in any handicap spot. Every single spot was taken. Only one had a legal tag displayed. Every single striped loading zone was taken, too. I’ve learned, thanks to a couple Facebook groups, that this is a common problem in our many of our Cobb schools and little has…
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I disappeared because of weed.
I disappeared because of weed.
Shameless clickbait title, but it’s technically true. There are actually two major reasons I’ve been pretty quiet on the blog for the past year. 1. Burnout. I think I just hit a wall talking about TSC and I completely ran out of motivation. 2. Even when I did feel like posting I couldn’t talk about one of the most significant aspects of what was going on with Connor, which was that he was…
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I haven’t blogged much over the last year, except to rage over my pet political issue, so imagine my surprise when I was invited to the Novartis Blogging Summit for TSC.
*Insert legal disclaimer here–While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.* They also gave me a box of kittens. No. I’m kidding. Only one lousy kitten.
Four other moms to kids with TSC were also there.
Tina of Captain Jacktastic, who I initially met around the time I started this blog through WordPress and later Facebook.
Heather who has written several pieces for Huffington Post, and I met for the first time last year in DC during the TS Alliance’s March on the Hill to continue funding for the Tuberous Sclerosis Complex Research Project.
Laurisa of Land of La, who was one of my early stalking victims when I was finally able to do TSC research for more than two minutes at a time without “breathing” into a paper bag.
And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.
The day I left, Connor seemed to have a bit of cold and Chris thought he was coming down with it as well. This is called foreshadowing — but I’ll get into that later.
I was picked up at the Newark airport by a man holding a sign with my name. I am accustomed to such a lifestyle as I force my husband to stand in the driveway most days and greet me in this manner when I come home. It turned out Laurisa had shared my turbulent flight that wasn’t quite in a “luggage bins popping open” category, but definitely required gripping of the arm rests and the parents in front of me to intervene with their 10-year-old who was launching a panic. The driver whisked us to the Short Hills, New Jersey Hilton where I luxuriated briefly in the softest king bed ever then headed down to the hotel bar to meet the other ladies.
We had dinner with several Novartis employees and shared our stories so they could have insight on what it’s like to live day-to-day with TSC. For those that don’t know, Novartis produces Afinitor, a medication that can shrink certain types of tumors that occur in TSC. Connor, fortunately, does not have a need for this medication at this time, but it would be a likely course of treatment should he ever develop a SEGA in the brain or large AMLs in the kidneys.
It’s weird to sit and talk about your kid and TSC without having to give a bunch of background information, explaining what certain acronyms mean or why a particular medication might be preferable to another. They already know and they’ve already been there.
When dinner wrapped up at 8, we caught the train into NYC to meet another TSC mom who lives in the city.
Correction, four of us went. Tina’s no fool. She wasn’t about to let a king bed, personal hotel room and a long, luxurious shower without the door cracked listening for shenanigans pass her by.
We met fellow TSC mommy Naomi at Haymaker Bar, a few blocks from Grand Central Terminal, ordered drinks and appetizers and talked about some more acronyms that needed no defining.
Heather revealed that Times Square was on her bucket list and since I was pretty much intent on spending every minute I could squeeze out of this 24-hour trip in NYC, I was fully supportive of her checking that item off. We trekked through the tourist mecca, which was hopping on this Friday night. As we passed by the Disney store, we were drawn inside by the sheer number of people inside at midnight. Apparently a large number of tourists venture all the way to New York and decide, as one day rolls into the next, that they simply MUST HAVE AN ELSA DOLL RIGHT NOW. It was amazing. And a little sad. But mostly amazing.
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We caught the train back to Short Hills where we bonded further as we almost spent the night in the station. The hotel didn’t offer much hope of a taxi and their shuttle service had stopped. Our first Uber driver was too stupid to find the train station. No we are not shopping at Trader Joe’s at 2 am. The second one found us, but appeared to have only been a licensed driver for a day or two. At any rate, we made it back to the hotel where it took me another hour to fall asleep, still high off neon and LED lighting (did you know that the Times Square district is the only district with a requirement for businesses to have illuminated signs and that there is a minimum, rather than maximum, lighting requirement)?
The next day was filled with discussions of TSC, diagnoses and, most importantly, what kind of resources would we have liked to have had when we received the diagnosis. We spoke of the fear of what was out there on the Internet and at least one person had been told to stick to TSAlliance.org and not to Google. Period. Novartis unveiled some new informational pamphlets for our feedback and said they are revamping their informational site.
There were some other resources they want to be sure the TSC community is aware of.
The Afinitor $25 co-pay card. This only works with commercial insurance (not Medicaid). If your co-pay is more than $25, print this out and take it to the pharmacy.
Afinitrac. This support program offers financial and educational support, deals with your insurance and provides other resources. Please note they are only allowed to offer it to patients who are using Afinitor on-label. If you are using it off-label (meaning for something it has not been officially FDA-approved for yet, like seizures or cognition) they are prohibited from providing this support.
Turbo & Scott. Previously the story book about a kid named Scott who has TSC was only available online, but it is now in print. It goes into a lot of detail about TSC in more kid-friendly terms. It’s a bit complex for younger kids or kids who are cognitively affected, but for older kids, siblings, or friends, it can be a great resource. There is also a comic book about a teenage Scott on a quest to meet others with TSC.
I was not required to share these resources or blog about the summit in order to attend, but I wanted to make sure people know about these resources as for many of us, the use of Afinitor (Everolimus) could very well be on the table one day, if it isn’t already.
I’m sad to say that I had to leave just before we wrapped up to catch my flight so I didn’t get to spend more time with my mommies, but perhaps my suggestion, as I exited, to do this again in Vegas will be heeded by Novartis ;)
And so I headed home where I would soon learn that the cold was not a cold…but more about that in my next post. A full update on Connor to come and the reasons why I’ve dropped off the mommy blogging planet.
Traveling to the Novartis Blogging Conference for TSC I haven't blogged much over the last year, except to rage over my pet political issue…
Georgia Medical Cannabis Commission Votes Against Recommending In-State Cultivation
Georgia Medical Cannabis Commission Votes Against Recommending In-State Cultivation
I’m gonna keep this short and sweet. For some background you can read this if you need it. Today the Georgia Medical Cannabis Commission met to decide on the final recommendations for the state and the medical cannabis program. The vote was 9-5 against recommending in-state cultivation, which would keep medicine more affordable for patients and not force them to break federal law obtaining meds.…
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Governor Deal plans to block medical cannabis expansion.
Governor Deal plans to block medical cannabis expansion.
I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter. Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help…
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This is Epilepsy
From a fellow TSC mom.
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How could I have had TSC my whole life and not known it?
How could I have had TSC my whole life and not known it?
Day 31 of Blogging for TSC Awareness by guest blogger Leanne Cirigliano Briand August 27, 2014 changed my entire life. It was just three weeks after my husband and I were married when I had a seizure in my sleep. Fortunately, my husband awoke and immediately called an ambulance to take me to the hospital. There, I underwent numerous tests, scans, and a misdiagnosis of MS. Not too long after…
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For all we have lost, there are great treasures that remain.
For all we have lost, there are great treasures that remain.
Day 29 of Blogging For TSC Awareness by guest blogger Rebecca Thereault For all we have lost, there are great treasures that remain. Tuberous Sclerosis Complex (TSC) hijacked our daughter’s genome. Like the lowliest of thieves, it stole from an innocent baby. It’s haul? A base pair on her TSC2 gene on her 16th chromosome, to be exact. Two tiny amino acids that shifted her genetic code and…
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Scars Do Not Define Us
Scars Do Not Define Us
Day 28 of Blogging for TSC Awareness by guest blogger Katie Eliot (Durham, England) Hi! I’m Katie, I’m 35 and I have TSC. My TSC story should have begun when I was a baby, but a series of events put off my diagnosis until much later in life. Doctors realised that there was something very wrong with my heart while my mum was in labour. Mum told me that the delivery room was like and episode…
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Identical Twins Diagnosed With TSC
Identical Twins Diagnosed With TSC
Day 27 of Blogging for TSC Awareness by guest blogger Jobina Antochow-Piekema (Clairmont, Alberta) At our very first ultrasound we were given the great news we were expecting mono/di (identical) twins. During a routine ultrasound at 25 weeks we were told the twins both had cardiac rhabdomyomas and a possible diagnosis of Tuberous Sclerosis. At 28 weeks pregnant after fetal echos, ultrasounds and…
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Not the Healing I Wanted, The Healing We Needed
Not the Healing I Wanted, The Healing We Needed
Day 26 of Blogging for TSC Awareness by guest blogger Katie Nguyen When I was a teenager I would quietly slip into my sister’s bedroom at night and pray for God to heal her. I remember the last night I did this. The last chance I gave God to heal my little sister. But let me back up for a minute. I suppose it would help to tell you about my sister first. My sister Alicia was born with…
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The Strength of Family Through Three Diagnoses
The Strength of Family Through Three Diagnoses
Day 2 of Blogging for TSC Awareness Month By guest blogger Paula Krischel (Dwight, Illinois) Paula with her husband and three sons, Mason, Joshua and Adin. My story started when I noticed my infant son, who was 11 months old, puking and seizing. We went to our local hospital, and his pediatrician knew it was more than he could help with, so he sent us to Chicago.…
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A Glimpse into the Journal of a TSC Mom
A Glimpse into the Journal of a TSC Mom
Day 23 of Blogging for TSC Awareness by guest blogger Kaci Kennedy (Woodward, Iowa) A glimpse of my last two days thanks to TSC. May 17th, 2015. In to do mode. Pack the van. Must hydrate Porter. Push Pedialyte. He will gladly drink the sugary drink all day long. Drive four hours to our nearest TSC clinic. Try to check into hotel. Realize your ID is not in your wallet. Hold back tears but minorly…
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A Dad's Perspective
A Dad’s Perspective
Day 22 of Blogging for TSC Awareness by Kelsey and Justin Hudson Many mother’s experience TSC on a personal level daily. They’re home with their child that they’re terrified to put in daycare or attending appointments that are almost daily. But then there’s husbands, whom are hard at work. Always making sure there’s a roof over their families head, food on the table, and the health insurance that…
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