Friday, January 27, 2017

Cannabis Cured My Epilepsy - Almost Two Years Seizure Free


It is the only drug that has ever stopped my life-long seizure disorder. I had seizures for almost 40 years. I had my first seizure when I was 4 years old. In May of 2017 I will be two years seizure free.

Cannabis is the only drug I use to prevent seizures.Cannabis is the only drug I use for chronic debilitating nerve pain.Cannabis is the only drug I use to treat Multiple Sclerosis symptoms.

I am a legally registered medical marijuana patient.I am able to pay for the total cost of treatment out-of-pocket.I have experienced no negative physical or psychological side effects.

I love seeing children cured of their disabling diseases by cannabis.I love contributing to the world again.
Keep the sun shining!

*/

<3,
RQ

Wednesday, April 13, 2016

Tinnitus and Multiple Sclerosis

My left ear rings in my mind at 3696 HZ and 50 DB. I've been trying out various tinnitus masking apps. Liking Whist so far. I cannot hear the ringing while I use the app. 

I can hear conversations and watch tv! Love it! Just ordered some wireless Bluetooth earbuds because life as so much better without a mind alarm constantly going off. 

Monday, February 29, 2016

Daily Life With Multiple Sclerosis - I'm Just Here For the Drugs!

Insurance took my (now late to refill) Copaxone script away from Walgreens and now I have to deal with Ohio mail order fuc*ery.

Good thing I'm just taking these drugs to get high and not to manage some scary disease or something. Whew! - written 7 months ago by RQ in her secret diary

Friday, February 26, 2016

Daily Life with Multiple Sclerosis - I Started Therapy

Hey, I made that!
And you can download it for free!
I started seeing a therapist yesterday and it was weird. It felt like everything was odd and out-of-character in some way, like everyone was trying too hard to become a part of today's story.

It is 98 degrees outside and the therapist is wearing a full three piece wool suit. Nobody else at this practice dresses that way, most are in t-shirts and shorts to be quite honest, I live in a very dress-down rural place where it's too hot to get too formal. So yeah, a three piece suit!

The suit and its vest were beautifully cared for and were accessorized by the most perfectly manicured male hands I have ever seen. Damn. My phone is buzzing...

Phone/not therapist story.....

Now the pharmacy jock on the phone is telling me about how my medicine can cause seizures or exacerbate seizures (I haven't experienced any increase/whatev) and then he goes on about site reactions and have I had any. Yes. Yesterday a few of the sites I had injected the previous week swelled up and got red and itchy. Maybe because I was out in the heat? All he said was "that's weird". Thanks, that's very helpful information.

Oh, the therapist, he seemed to like me A LOT, not like weird creepy but on the border. I do not need to be told "Out of the thousands of people i have worked with, you are one of THE MOST fascinating, funny and brilliant I have ever met. I mean that sincerely." The therapist told me that within the first half hour. IS THAT NORMAL? WHAT THE HELL?

He feels that I have adjustment related depression; I'm adjusting to having MS. He suggested I write a best seller (because I'm the most fascinating person ever and his life will never be as fascinating as the life he imagines I have had). I laughed and asked if he'd ever published anything or knew anything about how stressful and hard the writing and publishing world are.

We haven't had an actual therapy session yet, this is just all the paperwork/intake bullshit that took two hours to do. A lot of computer screen questions.

I'm still on the phone...Pharmacy jock goes over "usual side effects". 

“You may experience dimpling, indentations, that do not go away, generally after years of use of Copaxone, while unsightly, this is not life threatening.” 

Sorry, I made a laughing snorting sound. Go on.. 

“You may experience lesser effects if you rotate your injection sites regularly.”Your skin might die. No big whoop.“You may experience 'flushing'. Flushing may begin as a feeling of a heat flash immediately following an injection, generally within 30 to 60 seconds. This may be followed by shortness of breath, chest tightness and extreme anxiety. You should remain seated if this happens. You may feel that your life is in danger, this is normal, you will not die, remain seated. If you ever experience “flushing” it is more likely for you to experience it again. You can try taking Tylenol????” You might feel like you gonna die. Sit the fu*k down.

Thursday, February 25, 2016

Multiple Sclerosis - Better Late Than...

Objects made of random polymers
Actually, I'm tired of things being late. My Copaxone order arrived today, four days after my last injection was scheduled.

The online pharmacy jock said "sorry 'bout that" with less enthusiasm than my two-weeks-past-due pregnant waitress who was working a double shift and forgot my calamari appetizer. I totally forgot I even ordered squid rings! Wow.

Much like the calamari appetizer, in reality, I didn't need the Copaxone just quite yet. As with any project, I try to allot some buffer time, a week to ten days of time for everything that can go wrong to go wrong with hopefully enough time to correct the errors. I don't win 100% of the time but today the buffer (drug hoarding) saved me. -written 7 months ago by RQ in her secret diary

Wednesday, February 24, 2016

Multiple Sclerosis - Drugs Plus Disinformation Equals Disservice

You know what grinds my gears?

Incorrect information.
Unnecessary arguments.
Promises of false hope.

My Neurologist's PA had an argument with me about Copaxone. She told me that within three months it would CURE my symptoms. Whaaaat? Yes, she used the word cure. I shook my head and as politely and quietly as possible said a few words. "That's not what the literature says. Where did you get this information?"

She told me that my symptoms would go away completely in three months. She was adamant about this. I told her that I started taking the medication with the understanding that it might help reduce the frequency of relapses, nothing more, nothing less. Shared Solutions had been very clear with me up front that Copaxone was not meant to be used for day-to-day symptom relief. Day-to-day symptom management is a different animal.The PA still insisted that the medication was a cure. Whaaaat?

Ya know, I am not a doctor, my previous medical education and work was purely clinical lab - I was all about mice, petri dishes, viruses, bacteria, DNA - a glorified bottle washer and button sorter in a lab coat!

My mind, which is thankfully still capable of critical thinking, is blown. It's perfectly fine for you and I to informally say, "Hey, I feel better since I've been taking the Copaxone!". That's great. Anecdotally, perhaps some people do feel that they have a complete recovery from existing symptoms after a short period of time. Awesome! We're not doctors. Unfortunately, anecdotes are not science and by stating such as fact you do an incredible disservice to your patients. It is both bad business and bad medicine. written 7 months ago by RQ in her secret diary

Tuesday, February 23, 2016

Multiple Sclerosis - The Solumedrol Days - Doggone It!

Hey Kev, is your vet accepting new patients?
Sheeeiiit. What a week.

Well, I was iffy about taking oral steroids for a relapse. The good news is that I had no side effects; the bad news is that my Neurologist prescribed me a dose of Solumedrol suitable for a small dog.

How did I ever figure this out? My friend's Chihuahua started the same regimen on the same day! Wait, Kevin the Chihuahua weighs 7 lbs and has "itchies". I, an adult female human, weigh at least TWICE that amount and had a damn MS relapse! I am looking for a competent Neurologist. My numbness has increased. My hearing has deteriorated. However, the exquisitely torturous nerve pain that has resided in my body for years has eased since I started Cymbalta. I saw a psychiatrist lately who treats a number of patients with MS. I am hoping that this ninth attempt at better living through chemistry works better than the previous eight. written 7 months ago by RQ in her secret diary

Monday, February 22, 2016

Multiple Sclerosis - The Solumedrol Days - Flair for Flare

Sh*t. Oops. Started Solumedrol today after two days of thinking I could ignore my body. Increasing numbness on my right, wild mood swings, seizures, fatigue so intense it felt like I was dragging my tired ass, a baby and a lead doppleganger of myself...and WHAT? I can't hear for sh*t right now and my vision is blurry.

Obvious Life Protip: ask for help, take naps, and you can't win by ignoring symptoms. Take it from me kids, being a stubborn ass will just land you in trouble. written 7 months ago by RQ in her secret diary




Sunday, February 21, 2016

Daily Life With Multiple Sclerosis - Sunday Funnies with Señor Buttpaste

Happy Sunday!

My assistant, Señor Buttpaste, has successfully given me a cold. It's weird, I feel GREAT otherwise this morning. How about you?

-written 7 months ago by RQ in her secret diary

Friday, February 19, 2016

Seize the Diary - Daily Life With MS - Happy Friday!

I am feeling happy but also fatigued and sore today. Taking it easy.

Hugs to all, especially those who have cheered me up on so-so and bad days.

Happy Friday! And happy birthday to my granddaughter!








Thursday, February 18, 2016

Daily Life With Multiple Sclerosis - Caca-latte! It's Time to Paint!

My grandson calls chocolate caca-latte. Melted milk chocolate is the color of my kitchen and livingroom. I have a few tiny spots of paint to finish today. I LOVE IT SO MUCH!

I just finished my work for the day.  Now it is time to rest, inject disease modifying drugs into my left glut, take another 1000 milligrams of anti-epilepsy meds and finish that paint!
Oh Yeahhhhh!

Secret Depression Diary Archive - Thursday's Jam

--Thursday's Jam--Watching Williams and Sharapova on ESPN this morning. Today is my day off! On most days, for the past month, my 9 month old grandson has stayed with me while his mama is at work. While I am not capable of caring for a baby by myself, I can care for one with major assistance. I can do anything given I have someone else provide 100% full-time backup to do the job for me. Heh. It's good. It keeps me connected to my family. It's good even at times when I can do little more than lie down and watch my grandson play. It's been a week full of medical testing appointments and baby shuffling. I put off starting Copaxone for another day. Maybe tonight. No pressure. I was going to start on Tuesday but I was a sobbing exhausted mess covered in welting mosquito bites by the end of the day. I don't know why but mosquitoes and bugs in general love to bite me. written 7 months ago by RQ in her secret diary

Wednesday, February 17, 2016

Daily Life With Multiple Sclerosis - My Grandson Called

Secret Depression Diary Archive - Zero Fax Given? Part 3

My appointment sucked. The Neuro spent a whole lot of time trying to make excuses for the staff. "The prescriptions take a long time to fill because the insurance companies..." I cut her off. "No, your office is incapable of sending paperwork in a timely manner. I go round and round talking to your office, my insurance, my pharmacy, etc. I do know who has or has not received what.""We had a girl quit and everything blew up..." I don't care. Seriously. I don't at this point. It's a ridiculous excuse to use when you are denying patients basic care. I was then asked why I didn't start my Copaxone until July. "Because you can't fax." I explained this "not giving a fax" issue all over again.So how did things go with Shared Solutions? "It didn't. No fax." Any issues with the injections? "Not other than turning this into a DIY project, no.""Ok, so your blood-work looks great on the Copaxone and your MRIs are stable and why did you want your medical records?"Seriously. Now the Neuro was asking WHY I wanted my records. Also, I had NOT started the Copaxone before the last labs and MRIs. (After my appointment I looked at my labs, there were some numbers out of range, this was never mentioned. I'm not sure if the Neuro looked at my labs and MRI reports at all. Normally I review all of this info prior to appointments. Gah.)"I want to go to a therapist. Ok?"The Neuro made a weird face and asked 'Why?'.Why? I had to explain WHY someone with MS might want to see a therapist?We went over what prescriptions I need refilled and she checked my reflexes.
The appointment was over.I went to the appointment desk. I was handed my written prescriptions, given my October appointment date and told 'bye' with a finger-point to the door. "Ok, wait. Let me double check this. There's a prescription missing. Was it faxed to the pharmacy? I know that one doesn't have to be written."I wait at the desk 15 more minutes. "Oopsie, the neurologist forgot that one. Here ya go, I had her print it!"I walked out the door, around the building and back into the front door. "Excuse me, do you have my medical records ready?"Everyone at the front desk looked away. A staff member I normally don't see rushed up to me with an orange envelope.I said thank you. written 7 months ago by RQ in her secret diary

Tuesday, February 16, 2016

Secret Depression Diary Archives - Zero Fax Given? Part 2

A man in the lobby had also been yelled at by So-and-So and was now looking at me while his eyes began to fill with tears. He had been waiting for hours to have his own issue resolved. He asked me what was going on. I LOUDLY began explaining that apparently it takes months to get anything done here and you can't ask for anything without a string of people yelling at you. That's the system! The man leaned on his cane and we continued talking back and forth in the lobby for a few minutes. He asked me about other neurologists and I let him know that there are a number of practices that my own insurance doesn't cover but his might.I guess we were speaking a little too loudly. I guess I was trembling and crying a little too noticeably. The office manager shuffled me into a door and then into her cubicle. She began by making excuses. Excuses are neither management nor medical care. "Why do you want your medical records?" This was twice now I had been asked by the a staff member. Honestly, does it matter why I want my medical records? I have the right to a copy of them, do I not?It felt like when I was telling my junior high boyfriend that I wasn't going to break up with him. "No, I'm not leaving you for someone else. I just want my hoodie back."Damn.I was emotional but rational. I started by asking why it was impossible to change the address of my default pharmacy in the computer - the address was incorrect, the pharmacy in another town, and with every prescription I have to call and fight to have my meds sent to MY pharmacy not some pharmacy over an hour away in a different city. The office manager was surprised when she pulled up my chart. "Oh wow, why hasn't this been corrected? This isn't your pharmacy."Ya know, I don't know lady, you're the one who has been managing the place for 19 years. I didn't say that. Why is it going to take another week to get my medical records?"Why do you want your medical records?""Listen, I have the right to my medical records. If you MUST KNOW I want to go to a therapist. I'm not leaving your practice. We are like so totally not breaking up. Ok?" That time I did say it. I also told the manager that I was the lucky because I possess the cognitive function necessary to constantly track their errors and fight them for every scrap of paper. Other patients are not so lucky. I would gladly do 100% of my own administrative paperwork but unfortunately I'm not authorized to perform pieces of the process, that I need from you.These are human lives your are dealing with and quite frankly I get more compassion out of my grocery clerk than anyone in your front office. I literally cry with happiness when I go anywhere else for medical care because I am treated like a person."You'll have your medical records when you leave today." Ridiculous. I'm a 43 year old woman and I had to make a scene to get my medical records.

Secret Depression Diary Archive - Zero Fax Given? Here, Have a Bitchfit! Part 1

In the continuing drama known as "My Neurologist's Office", yesterday I found myself face-to-face with their medical staff. I signed in to wait for my appointment. I was there to review my most recent MRIs, labs and let them know how Copaxone is going for me so far.The majority of the staff at my neurologist's give zero fax and zero f*cks about the treatment and care of their patients. To them we are not really patients, we are a f*cking nuisance and why the f*ck are we bothering them. WHAT?! WHAT DO YOU WANT?!! NO!!! That's how things run in their office. There's a whole lot of anger directed at patients and not a whole lot of evidence of basic medical needs being met.It took me two months to get the following things accomplished through their office: faxing a pre-authorization form to my insurance and faxing a prescription to my pharmacy so I could start Copaxone. This process was screwed up every step of the way. This process was only completed because I called them 3 times per week to "follow up". Why do I need to call 24 times to get two pieces of paperwork faxed that I was told were faxed while I was in the office at my last appointment? (Insurance and Pharmacy? They took under 48 hours to do their jobs. Impressive.)I gave up on the neuro office ever returning a call or fax to Shared Solutions. Seriously, someone from Shared called them every few days, they too were eventually frustrated by the lack of communication and Shared reps began to call and ask me to if I could help get through to my Neuro. Ha! Ya know what? Mentally I did not have it in me to add another item to beg for. Eventually Shared got someone at my neuro's to answer the phone and verify that I have a Copaxone Rx. (The very next day I got a pack of Shared swag. Kudos.) I'll take my fifth injection soon and at this point I do not feel I need a trained nurse to stop by. It would have been helpful a few weeks ago.There's something else I have been "following up" on for months, my medical records. I asked the front desk if they had my medical record request. They did. How soon would they be sending my medical records? Yes, just mail them directly to me, as written in the request. "Hold on, you'll have to ask So-And-So" the front desk assistant said.So-and-So grouchily yelled at me from behind the front desk, "Friday, hrmph!"Wait. It WAS already Friday.I quietly asked, "Next Friday?"So-and-So glared and yelled at me, "HRMPH!!! IF I HAVE TIME, MAYBE, MAYBE LATER THAN THAT!!"Seriously?I walked away from the front desk and sat down for a few seconds. I could feel my body trembling from the inside. My eyes began to well full of tears.

Monday, February 15, 2016

Painting the kitchen today.




Secret Depression Diary Archive - Hang In There Kitty


Seriously? My neurologist's office just left me a message at 8:30 AM letting me know they are "working on" getting that fax to Shared Solutions and that they have "called numerous times" and that "someone finally answered today so I got that fax to send back to them" and "I'm working on sending it back".Faxing - the esoteric art of not sending information between two businesses. Faxing - something that takes my neuro office an average of 52 days to complete, a record average that is being blown out of the water with this Shared Solutions fax and my request for medical records which have been drifting in the ether for 66 days. Yes, yes I do track everything. Seriously. I almost want to call them back and congratulate them on taking longer "working on" this than it takes for cat gestation - dudes you took so long I could have adopted a pregnant stray and had kittens by now. Hell, it's been 66 days, at this point leaving me a message saying you are "working on" something is not helpful. It makes me feel embarrassed for the office admins who work in that horribly mismanaged medical office.Anyhow, it's only Tuesday. Paws crossed for everyone to have good days and remember to hang in there kitty! posted 7 months ago

Mondays

Staring into the sun and squinting - featured in every childhood photo ever. 
You kids have it easy nowadays, what with your selfie sticks and all.

Sunday, February 14, 2016

My Love Bugs


Secret Depression Diary Archive - Necrotising Fasciitis!

Yesterday I started Copaxone.I chose the ugliest spot on my abdomen, you know, just in case. "Necrotising Fasciitis!" My brain bounced back to an old Pathology lecture. The screen in the front of the room filled with images of decomposing flesh. This is not the time to think about dead flesh. I never show my stomach in public anyhow and my boyfriend can't see shit without his glasses, so even if this Copaxone goes zombie flesh on me, I can handle. I put on my headphones and sat down. Everything is easier with music. Always. The prep and needle stick were uneventful. Most of my previous careers involved sticking sharp objects into living objects. Wow. That's quite a bit of liquid to inject. Welty fire. Not WELTY FIRE just Welty Fire. Jalapeño not ghost pepper. It wasn't FUN but it wasn't terrible. Meh. The welt is almost gone today. Whew. No biggie. posted 7 months ago

Saturday, February 13, 2016

My Book - Love Letters 2 - Be My Valentine

Oh yes indeed, Love Letters 2 - Be My Valentine will be LIVE world-wide on Amazon beginning tomorrow on Valentine's Day! It is my second collection of love letters written by people all over the world and produced in under 24 hours!
#loveletters2016 #crowdsourcing #valentines #amazon #book #ebook #global #mswarrior

Back to work!

Raquel

Secret Depression Diary Archive - Irked

Irked. Specialty pharmacy calls me this morning. Not only was my Rx sent to a pharmacy an hour away but my Neuro requested 20 mg of Copaxone 3x weekly. (You and I both know that the 20 mg is daily and the 40 mg is 3x per week.)Specialty pharmacy nicely pleads for me to "follow up with your doctor because they never return our calls, maybe they are better with patient calls."They don't return my calls either. Ever. I did call. Shock. The assistant answered and assured me that everything will be a-ok. I repeated everything in simple language three times. 40 mg Copaxone three times weekly. Send to X pharmacy ONLY. Repeat. Repeat. Thank you so much. Thank you. Thank you. I honestly don't believe a word. Nothing I have requested from my Neuro has materialized. I have another round of MRIs in a month to check progress with this new med I have yet to take. I wait. We all wait. I try to focus on other things. Rather than cry today, rather than allow the fear to creep on in, I'm writing this post. The tears are swimming on the surface of my eyes but don't fully materialize into running tears. Breathe. And then I'm going to go smoke weed, meditate and listen to music for 20 minutes. posted 8 months ago.

Friday, February 12, 2016

David Bowie Valentine

Today I got this freaking awesome David Bowie Valentine from a pally in NH!

Secret Depression Diary Archive - Rant Rant Rant

It'll reach 104 in my part of AZ today. The air conditioner is holding up and I am fine. Rant ahead. I am still waiting on Copaxone which is now "being processed" by the wrong pharmacy in the wrong town and will eventually be delivered to me. I guess. Insert giant comical question mark. I have no idea what is going on. The current pharmacy refuses to transfer the Copaxone Rx and claims they've already sent the script to their specialty pharmacy yesterday. This was the first contact I had with Pharmacy-i-didn't-want. Can I transfer the script next month? To my pharmacy? Nobody knows. I'd really rather go to my nice pharmacy 2 minutes from my house than wonder if a pharmacy an hour away can ship meds to me. Every freaking time I go to the Neurologist I have to specify MY PHARMACY. 80% of the time they eventually send to my pharmacy and not some freaking town an hour away that is almost always one degree off in temperature from Death Valley. I despise failure that I have no control over. This is the little stuff that chops away at me. My preauth was not done for weeks ( why do I have to call and follow up on this stuff daily?), medication not ordered equals a dozen more calls, my insurance is always an hour plus call and everything goes in circles for hours and hours only to be repeated the next business day. It's not as bad as the 3 hours spent being hung up on and yelled at repeatedly by strangers on fuzzed out phones who my insurance contracted for transportation. After many voices and many hang ups, finally, someone said no problem we can handle your medical transportation arrangements. You should have arranged your appointment at a better time though for us. Pardon? There was a six month wait for that appointment. I was offered an 11PM bus on Greyhound with 6 hour ride, appointment not until the next afternoon and bus back following night at 11 PM. I was trying to wrap my head around how it would all be ok and I still wasn't sure how I'd get to my appointment, cab from bus depot to big hospital complex I don't know. I could do that if I felt good but I was in the middle of an exacerbation and damn, you know, it's like the walls are caving in all around. I never made it to the appointment. I hung up the phone and cried for three hours instead. It didn't matter. A few more tests and my Neuro had a diagnosis to work with. posted 8 months ago.

Thursday, February 11, 2016

FREE LOVE & FREE BOOK

Today I would LOVE to get a love letter from you! 

Send it to rq@seizethdiary.com

It's Lunch Time Love Hour!


Available for free through Valentine's Day! Click to download.Share Your Love - Send a Love Letter Today! See Your Letter in a Book on Valentines Day. Download the new book for free on Amazon on Valentine's Day!

Dearest Valentine,

Last year over 150 people wrote love letters.
Today I would LOVE to get a love letter from you!
You can write a love letter to anyone!
Email your love letter to: rq@seizethediary.com
On February 13th I will open my mailbox.
I am excited to see how many love letters I will get.
On February 14th I will publish a second collection of Love Letters.
I will include at least the first 150 love letters I receive.
I will share that collection with you for free.

The first edition of Love Letters is also FREE for a limited time! Get it on Amazon today!


P.S. Shout out to all of you living with autoimmune diseases and/or depression. I was diagnosed with multiple sclerosis last year. I have never struggled so much nor been so happy in my entire life. I am surrounded by so much love each and every day! heart emoticon
P.S.S. And thanks for reading and participating in my lunch time projects.

Yours Always,

Raquel

‪#‎msawareness‬ ‪#‎mentalhealth‬ ‪#‎sharemorelove‬ ‪#‎valentines‬ ‪#‎love‬ ‪#‎freebies‬ ‪#‎free‬ ‪#‎cheapvalentine‬ ‪#‎loveletters‬ ‪#‎crowdsourcing‬ ‪#‎publishing‬ ‪#‎author‬ #lovehour

Secret Depression Diary Archive - Copaxone and Canine Gestation

I'm skimming what I just wrote below and thinking don't hit post. So... POST. I've had my Epilepsy under control for a few months and now I focus on Multiple Sclerosis. I'll start Copaxone next week after my regularly scheduled MRIs and labs. It's here. It's in my refrigerator. Did you know that a pregnant dog carries her puppies for an average of 63 days prior to birthing? It takes nearly as long for my Neuro's office to fax my prescription for Copaxone to the right place with the correct prescription information. It took 52 calendar days to get my Neurologist's office to correctly fax my freaking prescription! I love calling 3x per week, staying on hold an hour and leaving detailed messages for those rude a-holes. My pharmacy only took 24 hours to fill the prescription. They rule! I love my pharmacy folks! They are always friendly and helpful. I still need to buy a few supplies to perform these injections. My neurologist's office didn't send The Form to Shared Solutions who provide training and supplies for free, given your doctor sent The Form. Shared solutions cannot get a response from them either. I have my meds though! I will start my injections next week after my MRIs and lab work.posted 7 months ago

Wednesday, February 10, 2016

My Life Right Now - So Much Love

Tomorrow I will begin sharing a series of my private journal entries with you about my struggle with depression last year. I was newly diagnosed with multiple sclerosis. I was in a state of free-fall. Today I have found my wings again and I am soaring.

Sunday, January 31, 2016

Cognitive Changes & Adaptive Learning Strategies for Multiple Sclerosis

That is what I have been thinking of lately.


Saturday, January 23, 2016

Dear Universe

Dear Universe,

Life is terrifyingly amazing right now. 

Love,

RQ

Tuesday, July 7, 2015

Pale Blue Dot - MRI Yesterday - Start Copaxone Tonight

I start Copaxone tonight.
I had my first MRIs on April Fool's day of 2014. I had my fourth MRIs yesterday. I am curious to see the radiology reports and images in a few days.
Prior to diagnosis, the differential diagnostic sushi menu choices of my MRI reports including chronic transient ischemia, hemorrhagic brain tumor and enhancing lesions of unknown origin. AKA something looks weird but we have no idea what it is yet.
I put on my lab rat outfit  yesterday - black tee, black yoga pants, sandals, no jewelry,nothing metal whatsoever, hair in ponytail, extra socks in purse.
I took two sips of coffee. How was I going to NOT need to pee for two hours? Damn. It was good coffee.
The two hour MRI was strangely exhausting. For me it's not the ice cold room, the gandolinium injection or the lying still in a snug tube. It's the noise. 
I noticed many years ago that certain repetitive mechanical noises affect me physically and mentally in a negative way. This "negative way" can vary from discomfort and anxiety to seizures and MS exacerbation triggers. My Neurologist has no idea what I am talking about yet I see thousands of people with MS talking about this every day. It's described as hyperacusis, startle syndrome and a few other fancy words that basically mean that sound makes you lose your shit sometimes. 
I took a .5mg Klonopin prior to my appointment. It seems to help me overcome everyday noises. Maybe it was because the tech gave me headphones and never turned on the music (they never had music before, just headphones and a lot of foam around my head/much quieter), maybe my hearing is continuing to recover, but the MRI's repetitive squeals made me feel a familiar aura of nausea, migraine and body tightness wrap around me.
There's no mirror in this particular MRI machine. I cannot see the tech doing his tech-like stuff from his brain recording studio. If I open my eyes I just see a big helmet hovering an inch from my face and glimpses of the beige metal tube. Part of the mask grabs the bottom of my chin uncomfortably. I flex my ankles and shut my eyes.
I kept telling myself to lie still, breathe, don't move. Don't push the button to get out. Get this done. Keep your eyes closed. Forget you are here. It will be done soon. You probably only have an hour and 45 minutes left! Fuck. I keep telling myself to just give it 3 more minutes before pressing the escape button.
Afterwards, it is difficult to describe to others that I want to go to sleep for the rest of the day because I feel exhausted, tortured, and empty from lying in a freaking tube. I feel as though I have just survived a major traumatic event.
I cannot find the words to say to others to explain these types of situations. Everything sounds ludicrous before the thoughts forms into words. I will say too much and too little all at once. I will hurt others feelings because the words aren't right. It sounds like I am blaming or pushing away others when I try to explain.
I have not had this noise issue happen during an MRI before. I did not have a speech prepared for this.
I went from MRI to grocery store to home and later to bed.
I woke up at 2 AM and cried and cried and cried. I felt so weird. Out of it. I felt like a two dimensional object drawn on a piece of pale blue construction paper. The two-dimensional nature of the imaginary drawing felt good. It felt clean and stable. It did not hurt. I felt as though I could cut myself out of the pale blue paper and I could float away. I would not have to explain the jaggedly cut lines or the hole left where once my illustration existed.
I sleep. I dream an old memory...
I am in preschool. The coloring page paper is so thin that I end up coloring my circle on the wrong side of the paper. I color the circle cornflower blue. The crayon is in the lines but on the wrong side of the paper. I get kicked out of preschool on day one.

Monday, June 1, 2015

Uncontrollable Crying

I heard the vacuum running in the other room. The vacuum screeched mechanically. Whirring. Oscillating. Repeating. Transfixed by the noise, my brain emotionally shivered until I cried uncontrollably. Whirring. Oscillating. Repeating. My stomach churned nauseously in response. My right temple pulsed with a painful electrical stab. Tears ran down my face and splashed on my arms. I began to sob uncontrollably. Whirring. Oscillating. Repeating.Whirrrrringggg. Oscillatiiiiiiiiiinggg. Repeatiiiiingggg.

A photo of me wailing in the Spring like a heartsick quail.

It reminded me of feverish dreams from childhood. 

Uncontrollable crying occurs in approximately 10% of people with MS. 

It is 100% uncontrollable when it happens to me. Sometimes it is accompanied by seizures. It is embarrassing as fuck. I am fascinated and horrified.

Uncontrollable crying. It is difficult to describe. It is a deeply emotional feeling with NOTHING worldly attached to it. Nothing. 

It does not relieve stress because I'm not actually processing anything emotionally relevant. Does that make sense? It would be like me slipping you a drug that had no effect other than to make you cry for a few minutes. It would not alleviate any existing stress in your system or help you work through your emotions, it would just be an unexpected neurological reaction to a chemical process; like a bad trip, maaan.

What I am describing is distinctly different from depression or grieving, I experience those in their full glory, different animals, this though is what would be described as uncontrollable crying aka Pseudobulbar Affect.

Monday, May 11, 2015

Well Fuck, I Have Multiple Sclerosis

And that's really all I have to say about it right now.

Multiple Sclerosis- The Lumbar Puncture

"I hope you don't have MS. That would be TERRIBLE."

That's what the nurse said to me before handing me a Coca Cola. I was lying down completely flat in a hospital bed. Let me be honest with you, I cringed. I cringed at what the nurse said. I also cringed because no way in hell would I be able to lie completely flat AND drink a soda.



I wondered if Coke reps had to hard-sell soda to Neurology departments as a cure-all for lumbar puncture headaches.

The lumbar puncture (spinal tap) was a non-event. Thankfully. I've experienced more pain buttoning up jeans I should have stopped wearing five pounds ago.

A man two curtains away from me was yelling, "I can't lie still for an hour! It can't be done! I won't!" The nurse attempted to calm him. "Sir, we haven't done your procedure yet. You don't have to lie still."

The Coke and its bent straw stared at me from a shelf overhead.

I spent an hour reading news on my phone and then I went home.

I got my test results more than a week later. It was after I finished jury duty, or rather was immediately excused from jury duty after having revealed that I have seizures inside of a courtroom filled with people. Man, I've never seen doors open so fast. It was mortifying and magical.


Saturday, December 27, 2014

Tempest & Toasters

from notes for December 17, 2014

Antiseizure meds cause depression. Hell, seizures cause depression.

I went to my Neurology appointment on Monday. It's weird because aside from weighing you and taking blood pressure they just talk to you. It's not even like when my old Neurologist would do all the reflex tests from 1940 on me. Not even that.

I saw the Neuro assistant. Her name is Tempest.  Tempest wears skin tight ultra thin cotton bell bottom pants that are covered in swirly designs. Made in India. I could totally see her vag thru the thin cotton. It was weird, a little weirder than the time I found the online topless pics of my yoga instructor.

So, I lost another 10 lbs in a month, my bloodwork is perfect and I still have weird tumors spots on my brain and seizures.

It was suggested that I have a spinal tap to check for Multiple Sclerosis. The lesions on my brain do not suggest MS, my symptoms do not suggest MS. Nobody has suggested MS. Fuck, I've spent almost 30 years having seizures off and on, can we focus on that?

Tempest is timid. I use it to my advantage. I'm not a dick but I do ask her questions.

What is the rationale for a spinal tap? Why now? Why not a spinal MRI?

No, the latest medication prescribed to me is not working - 10+ seizures per day, migraines, insomnia, hives, suicidal thoughts.

My latest medication is discontinued. I'm written scripts for two new. One is adjunct drug for drug I currently take and other is some Valley of the Dolls barbiturate headache medicine.

I'm kinda a dick when we review my latest MRI. No. Wrong. Temporal NOT parietal lobe. Have you ever seen the images or just the one paragraph written report from the Radiologist? The basics are wrong in the report. I don't go into the specifics. I feel cheated. I am not receiving decent medical care.

I don't want a spinal tap from the local hospital. No. Fuck no. I don't say it. I say that I have to think about it.

"We can't cure you."

I know that.

"Have you ever thought about keeping a seizure journal? "

Does she really ask that?


I have calendars, journals, charts, graphs, blogs, apps, etc. which all document my seizures. Doctors rarely want to see any of it.

"It's weird that you have parietal lobe  and not temporal lesions/possible seizure focus," Tempest says.

"No. They're Temporal. The Radiologist continues to make that mistake in his reports. Right NOT left and temporal NOT parietal. If only you saw the images. He missed so many things on MRI but I only have unofficial second opinions."

Tempest leaves the room for 15 minutes to talk to The Doctor. He has weird hair that is half eggplant purple on top and salt and pepper color on bottom. What is with his hair? I always wonder. Tempest returns with referral papers.

"You should go to this institute.  I think they'll still want a spinal tap," Tempest says to me. Gah, MS must be her Taint Cancer; she really wants me to have it.

I Wiki the place I am being referred to:

"...the world's largest neurological disease treatment and research institution, and is consistently ranked as one of the best neurosurgical training centers in the United States."

Fuck. Yes. I've been waiting two years to see a REAL specialist, an actual Epileptoligist.

Remember, I started out uninsured, spent $800 on an office visit with a Neurologist who gave me a six-month prescription for drugs that cost 20k  and which I begged Pharmaceutical companies to donate to me.

I call The Institute and then fax my referral and some med records. I'll have an appointment in a month or so. Maybe.

Here's what a lot of people don't understand - why go to these doctors, take these crazy meds, go through testing?

Because I have to do this. I have to be proactive about protecting my brain. Seizures in brains are like toasters in tubs, they fuck your shit up and can kill you. Or worse yet, seizures can irreparably damage your brain and I'd rather be dead than live in Idiocracy.

I take the risk. I take shitty pills that make me feel shitty because some day some combination of pills MIGHT control my seizures entirely. Eureka! I just want the fuck outta this tub.

I smoke cannabis every day as well. It helps a lot but honestly we need some Weed Science going on because the level of chemicals in the medical marijuana I buy is not optimal for treating seizures; we just don't grow the good shit here yet.

I am hell to live with, especially when I'm having seizure clusters or taking new meds which is most of the time right now. I don't sleep when normal humans sleep, I break down over everything and anything, I'm depressed every time I start a new drug or have a seizure. I think I am going numb. I can't feel my fingertips. Fuck. 

Otherwise, things are going fine.














Numbo Jumbo

Hulk concerned. Not sure if Vimpat or other issue. Brain BAD.

You can stop reading now unless you enjoy reading notes about symptoms. 

Increasing numbness now including face. Extreme migraine (on both sides of head but mainly right) with visual black spots and flashing in right eye. Lack of coordination and balance. Confusion. Mood sucks. Uncontrollable crying. Similar to February 2014 episode.

Spoke to pharmacist while picking up refills - suggested immediate contact with Neurologist. I will receive zero reply from their office (leave message after message) and will have to contact Barrows Monday about referral faxed to them last week.

Next local Neurology appointment is March. Specialist out-of-town Epileptologist hopefully sooner.

Tapering down Vimpat from 400 mg per day to 200 to 0 over next week or two to see if it is an issue. Will continue Keppra at 3000 mg per day, baby aspirin and multivitamin.

Began Harlequin strain of cannabis yesterday (7 or 11% CBD depending on lab from which results were given) which alleviated facial numbness and severe head pain.  No change in arm and finger numbness in right arm thus far.

No use of pain relievers, no sleeping aids, no Klonopin nor Fioricet.

Slept well.

Slight drooping on right side of face which hopefully resolves quickly. Blegh.

Today is improvement from yesterday.

Memory is better today so far.

Friday, December 26, 2014

Paresthesia (Numbness)

Numbness since day two of Vimpat. Now on day 12. Numbness now spreading to include face. Is this normal? 

Other side effects include dizziness, occasional lack of balance, increase in migraines, depression. 

Wait. Why am I taking this?

Contemplating next step to take. 

Second medication tried in past 60 days. 


Sunday, August 10, 2014

Medical Marijuana and Epilepsy - How I Stopped Living with a Bullet to The Brain

photo: Neeta Lind
Note: this previously unpublished post was written in August of 2014. Since that time my seizures have returned. I have had two additional AEDs fail. Medical marijuana does not 100% control my Epilepsy but provides me with excellent pain relief without dangerous side effects. 

She did not look at me. She stared at her hands and mumbled into her voice recorder about brain tumors. She reviewed my Radiology results from Cinco de Mayo; I had my second MRIs completed on May 5th. My first brain MRIs were on April Fools' Day. Brain abnormalities! Ha! Wait. Not fooling? Sad trombone sounds.

She said to take an aspirin a day. Seriously. An aspirin. The aspirin was for the chronic transient ischemic attacks. Epilepsy, brain tumors AND mini-strokes? Awesome. An aspirin?

She stared at the top of her own scuffed brown leather shoes while shaking my hand goodbye. "I wish I could give you a magic bullet but I can't."

I smiled. I felt bad for her. She looked sad in her greying labcoat. I wondered if she did her own laundry. Why not send the labcoat to a dry cleaner? Her greying labcoat bothered me.

I wanted to cry but instead I found a new obsession to occupy my time. I spent the following weeks in dark and silence. I read thousands of medical journal articles and dozens of Neurology books. How could I save myself?

Brain surgery? Sure, I could rock a mohawk and a gnarly scar.

Other pharmaceutical drugs? Sure. I was willing to try a fourth (or was it fifth?) new anti-seizure medication.

The new medication my Neurologist prescribed, Topamax, helped at first. It masked the pain of migraines. I did not feel great but I was alive. I continued averaging a dozen seizures per day.

I filled out the paperwork that would allow my body to be donated to Science. It was a grim but comforting action.

My romantic relationship fell apart. I moved back into my own home. Fuck.

On May 26th I smoked medical marijuana for the first time. It was my mother's idea, truth be told. I did not expect it to help me. I expected it to exacerbate my seizures. It was worth trying once though, right?

Within fifteen minutes of smoking medical marijuana every symptom I had disappeared. For the first time in years I felt normal. Hell, I felt great.

These are my shorthand notes from that first day:

5/26/2014 MM1

+ Results. Migraine completely halted in 8 minutes. Muscular rigidity ceased. @15 min: Mental blocks ceased. Paresthesia ceased.


I cried before I went to sleep that night.

I added marijuana to my daily medical regimen. I began smoking once a day at bedtime. I read everything I could find about Epilepsy and medical marijuana.

I had one additional seizure cluster in late May. I had two seizures total in June. All seizures coincided with my known seizure triggers. I was NOT having random seizures. This was a major breakthrough for me, this was progress.

I stopped taking Klonopin nightly. I slept peacefully without it.

Severe side effects from Topamax hijacked my body soon after I began taking the drug. At first it was loss of appetite and taste perversion. Taste perversion is not as sexy as it sounds. Everything tastes terrible, especially everything carbonated. There is Science which explains why carbonic anhydrase inhibitors such as Topamax make things taste terrible but I won't get into that. I lost 20 pounds in May and I could no longer drink beer. It was a small price to pay for migraine relief.

The side effects increased in July. My gums eroded and bled constantly. Anhidrosis kicked in - my body lost the ability to perspire! My body temperature became dangerously high unless I remained in an air conditioned room. Anhidrosis made me claustrophobic; I felt as though my body was vacuum sealed in plastic and I was slowly suffocating.

Breathe.

My Neurologist quit in July without warning. Her voice mail coldly informed me to call elsewhere for care. I booked the next available appointment with a new Neurologist: September 4th.

I began tapering off of Topamax on July 19th. Potential withdrawal effects: seizures and death. Three times a day I smoked a miniscule amount of medical marijuana, just enough to calm my brain.

Three days later a 21 year old actress named Skye McCole Bartusiak died from Epilepsy related complications. Sudden Unexpected Death in Epilepsy (SUDEP) is reality. SUDEP is the number one cause of epilepsy related death in people with pharmaco-resistant epilepsy.

My Epilepsy is pharmaco-resistant. Every time a seizure is triggered in my brain a game of Russian Roulette is played.

Topamax withdrawals are Hell: shooting electrical pains body wide, Alice in Wonderland visual illusions and a torso covered in hives. It took two weeks for the withdrawal symptoms to fade away. My mouth stopped bleeding. My body regained the ability to perspire. Food and drinks tasted normal again.

Despite going through painful drug withdrawals I had zero seizures in July. Zero.

It is August. Zero seizures. I will be alive when my grandson is born next month.

Have I found my magic bullet?

Saturday, August 9, 2014

Number of Seizures Per Month - 240 to Zero

May: 240
June: 2
July: 0

#epilepsy #medicalmarijuana #cbd #thc

Monday, July 7, 2014

A Letter - Dear Strong Beautiful Woman (who just so happens to be living with Epilepsy)

(Adapted from a personal email I sent out the other day.)

Dear Strong Beautiful Woman,

Thank you for writing to me the other day. Good to hear from you!

I experience a number of different types of non-convulsive seizures including the type that you mentioned having. I too have fallen down stairs and lost consciousness at the perfect moment, including in front of large crowds. I'm REALLY good at pretending that I must have tripped over nothing and I'm REALLY REALLY good at walking with two badly twisted ankles for long distances. Years of practice!

Normally those types of seizures I have once or twice a year. Although in May I had three of them. Neurologists sometimes lump these in with Complex Partial seizures or label them individually as Atonic seizures.

I have many types of other seizures though and some of them I will have up to 12 times per day. May was a month where I averaged 12 seizures per day. June was much better. I had 5 seizures TOTAL for the entire month.

Why was June so much better for me? Why did I have so many fewer seizures?

I stopped being so hard on myself. I started eliminating stress from my life. If it caused stress and was not absolutely necessary it did not belong in my life.

Some things were easy to delegate or decline.

Other things were not so easy.

Letting go can be painful. I lost a relationship in the process.

My top three daily priorities are to take my medicine on time, take a 30 minute nap and document any seizures.

You might think I spend most of my time at home, being careful, worrying about seizures and brain tumors and the next batch of tests my Neurologist has ordered. I don't. I spend most of my time surrounded by friends and family - laughing, living, going on crazy adventures.


Take care and don't be afraid to fall,

RQ

Tuesday, July 1, 2014

Uterusless Thoughts about Hobby Lobby

I fell asleep super early last night. Now I'm awake in my dark and quiet house.

I was thinking about this #hobbbylobby case, moreso about medical coverage. I HATE battling with insurance coverage. It's practically a full time job for me. I live with Epilepsy, a brain tumor or two and a mixed bag of other developing brain glitches. None of this is a secret so if you haven't heard about it you just haven't read my posts for very long. I'm fine by the way. How are you?

Anyhow, I was thinking to back when I was having some major gynecological issues. Uterine fibroids, menorrhagia so extreme that I required blood transfusions. I was in my mid 30s.

I already had my kids. My reproductive system was so far gone that I could not have more kids. I was really really sick.

Prior to ultimately having a hysterectomy, my doctor and I tried a number of birth control methods to battle with my extreme medical issues. I wasn't using the birth control as contraceptives - I was using them to battle major medical conditions.

I could not take generic birth control pills for my medical conditions. My options included pharmaceutical prescriptions for contraceptives similar to those that Hobby Lobby just won the right to not cover in their health plans.

I hate to think of women, really really sick women, that for no other reason than the whim of a corporate employer, being told that they cannot have an IUD or Ella to treat their uterine fibroids.

Instead the next options on the Corporate Approved Formulary of Medications Available for Women Because We Say So are GnRH agonists (horrible side effects including "chemical menopause" and bone thinning ) or a hysterectomy.

It is not good Science. It is not good Medicine. What it is is the inhumane treatment of Women.

*/

RQ

Monday, June 2, 2014

Adverse Reactions - Topamax Day 10


Topamax/Topirimate are the tiniest pills pictured here.
Small but powerful. The biggest are Keppra.
The yellow medium sized is Klonopin.
All three are AEDs - anti-seizure medications.
I also take a multivitamin and aspirin daily.
Treatment for nonconvulsive Epilepsy with migraines
with Chronic Trainsient Ischemia
& other brain weirdness (need more studies)

[warning: probably contains foul language]

Everyone addresses Epilepsy in their own way.

You can get down with your bad self (while hopefully not falling down on anything hard or ending up in the ER if you have THAT kind of Epilepsy), wear a different funny Epilepsy t-shirt every day of your life, get a big fat EPILEPSY SUCKS tattoo, make your disease a part of your identity, embrace it, seize it, whatever. But learn some way to cope with what will likely be a long and bumpy ride. There is no magic wand.

This is officially day 10 on my latest Neurologist prescribed "let's try this drug regimen". The newest addition to my antiseizure arsenal is Topamax. I don't get the fancy designer version but the generic "equivalent" Topiramate. It is prescribed primarily for seizures, as well as Migraines, and off label for curbing binge eating and drinking and possibly to make you carry on like a complete brainless airhead (some report that it makes them forgetful, reduces cognitive function, etc.). It's nickname is Dopamax. Oh Emm Effing Gee.

So far, I don't, you know, like, feel, like, totally, feel dumb or anything. Ya know?

I discussed this drug briefly yesterday at the end of my last post. See? Cognitive function still functioning over here.

The most common side effects of TOPAMAX® include: tingling in arms and legs, loss of appetite, nausea, taste change, diarrhea, weight loss, nervousness, and upper respiratory tract infection. Report any side effect that bothers you or that does not go away. 

So here's the FUN part of these meds - do the benefits outweigh the side effects? OK, then keep taking the medication. You don't magically get a new medication that has zero side effects - there is no such thing. Even those side effects that the label says CONTACT YOUR DOCTOR IMMEDIATELY IF, even some of those - are you willing to tough it out or do you want to pick what is behind door number 3? Are your SURE? Are you really SURE? 

My last drug in the mix which did NOT control my seizures had the odd side effect of making my oral mucosa thin (that's in my mouth, dude) and my mouth would just randomly fill with blood. In line at the grocery store? Blaaahhhhd! Talking to someone? Blaaahhhd! Gotta go, keeping mouth tightly shut while turning into a freaking vampire. I told my Neurologist that it was ok that the stuff left an acrid taste in my mouth for 3 hours regardless of how much water I drank, it was ok that I couldn't fall asleep all night but I couldn't live as 1960s B-movie Count Dracula just for kicks for a drug that did nothing to improve my life.

So far my side effects on Topirimate have included loss of appetite, taste change and weight loss.

Yesssss!!!! 

My only complaint about the loss of appetite and weight loss is going to be if it goes away. Are you kidding me?! I THINK I can figure out a way to ingest more calories and gain weight if it becomes an issue. I recently spent six months on an ultra low carb diet trying to fight the side effects of weight gain from other seizure medications. I was good. I was strict. I never cheated. I ate less than 20 grams of carbs a day every day (A woman following a conventional 1,200 calorie diet would be advised to eat 135 to 195 grams of carbs per day. A slice of bread contains 36 grams of carbs). The scale didn't budge. I tried to convince myself that I was building muscle mass. Haha. At least I wasn't gaining more weight, but damn, Big Pharma, you still owe me minus 30 lbs.

Taste change. This is THE WEIRDEST THING. There is actually a very boring to 99.9% of the world scientific paper that explains the mechanism that causes this to occur with this particular drug. Everything carbonated is now inedible. Too bad I can't drive because y'all would have a designated driver for Microbrewery nights. (Note: somebody remind me to bring a juice box sized wine to that high school reunion desert kegger at the end of June.)
Protip:
Put your pills for the day in a travel sized pill container.
Mine is an old hotel gift shop mini Excedrin bottle. Slap all of the sticky RX labels from your pharmacy
receipts directly on the bottle. Now your name and all of your pills names and dosages are in one portable place.

I haven't had my more common (daily) seizures since I started this new medication. I haven't had a clusterheadache/suicide migraine in 6 days and I have not had a loss of consciousness seizure (which I normally only have twice a year or so) in 4 days. It's not magic but it's a start.


*/RQ

Saturday, May 31, 2014

Neurotic Thoughts - Seizures, Tumors and Second Opinions


Seize the Sagittal T1 view of my brain.
[warning: foul language]

It's been a rough ride but I am still here.

I do not have a brain tumor. Repeat. I do not have a brain tumor. I want to establish this before my kids, friends or family read this and freak out. It's not a toomah.

Fifteen days ago I walked into my Neurologist's office. The words "low-grade glioma; right parietal lobe" were spoken into the computer's voice recognition software system. I was never directly addressed about this.

You think I have a brain tumor and you are not going to say anything directly to me about it? I was told to add an aspirin daily, switch a seizure medication and have another MRI in 3 months. I wasn't shown an image of the monster lurking in my skull. Nothing.

And that was it. "See you next month." * awkward handshake*

To be fair, Neurologists are odd creatures. They are not unlike Physicists or Engineers - socially awkward but fascinating nerds. I like them, they are my people, people of Science.

But man, say it to my face, make a completely inappropriate joke, draw a dick on my follow-up appointment card, don't just talk to the computer. :/

A million thoughts jumbled into my already overly active seizure ridden brain. What stage is this tumor at? What's the next step? What do I tell my family? When? Should I? How many years will I have left? Brain surgery? Right parietal? Oh hell no! They don't even shave the COOL mohawk part of your head for that. Lame.

I went home.

An undergrad in Biology really doesn't prepare you for the anxiety that surrounds the possibility of having a brain tumor, you do a bit of  Neurology related overview in A&P, Pathophysiology, Biochem, Genetics - but that's about it. Over the next week I learned enough about Radiological imaging (specifically brain MRIs) to be able to tell the difference between a T1 and T2 coronal Flair, etc. - so I could start asking questions - of anyone, elsewhere, anywhere who knew what the hell they were talking about.

I looked an thousands of normal brain MRIs as a starting point.  I read hundreds of published studies. I dug through case studies of abnormal brain MRIs of people with Epilepsy with seizures like my own. The difference between a normal MRI and an abnormal MRI is not always so simple, sometimes it is subtle, too subtle for an untrained unguided eye. I had 600 personal images to look through and the area of my brain that my Radiology report said was abnormal - well, I could not find an abnormality. I also did not have the 4 years of education it takes to begin to understand how to interpret funny brain pictures.

I uploaded the entirety of my MRIs to a private server on the Internet and learned enough jargon to create a decent presentation which I then shared with a number of people who are highly skilled in interpreting funny brain pictures. I got not only a second opinion but a third, a fourth and a fifth. It was a great relief to see so many people come together and although they disagreed over subtleties they agreed on one primary thing - most importantly that it is highly unlikely that it's a low-grade glioma - IT'S NOT A TUMOR.

I could never find the abnormality I searched desperately for because my Radiology report was interpreted incorrectly. The primary abnormality listed on the report is located in my right temporal lobe NOT my right parietal lobe.This makes a huge difference when dealing with care and treatment options. It also lets me know that my undergrad in Biology was not a complete waste - I still know the difference between my ass and a hole in the ground and my temporal and my parietal lobe; my diagnosing Radiologist, I'm not so sure about - I don't know how many images this person processes a day or the last time this person slept. This is my life and I am my medical advocate.

So, I don't have a brain tumor. During my discussions with my expert panel even further abnormalities in my brain were brought to light that require treatment and further study. The left side of my brain is having mini strokes which domino effect into seizures and that needs to be addressed because bitches be going numb and dropping and shit. Falling on the floor and busting your head, twisting your ankles and having black and blue legs sucks. I want to wear high heels and drive a freaking car already.

I have a good roadmap for directing my medical care. I am not in the dark.

My new medication is working well for controlling the majority of my seizures and migraines but has taken away my beer drinking superpower (EVERYTHING carbonated tastes like salt, bile and Dawn dishwashing detergent, shaken not stirred) but I have gained a new superpower - I am dropping weight like mad and oh my gawd I am going to look sooo good at prom this year.*hairflip*


*/RQ

Wednesday, May 21, 2014

There IS something in my Right Temporal Lobe

My brain. The white spot the arrow points to is an abnormality in the right temporal lobe which is likely causing temporal lobe seizures. (Axial view mirrored. Pretend you are looking up at a slice of the brain taken with a camera viewpoint from the feet only everything is backwards.)

See? Shit. It's like having my own Big Foot sighting captured on film!

Maybe it doesn't look like much to you, not impressive enough, not big enough, not sexy enough but this story is about me, not you. Go get your own Big Foot.

I still have what may be seizures or a mix of ischemic events and migraines and seizures or who knows, at any rate it's a royal pain in the lobe.

There's other little anamolies lurking about it my brain but for now - get seizures under control, stop migraines, try not to have an aneurysm, spend good times with great people and live like a rockstar.

Do I know my brain or do I know my brain ? Here is a sketch of my headache area I drew on March 7th of this year: 
Note:MRI images are mirrored/backwards from normal view. 


Monday, May 12, 2014


Thursday, April 3, 2014

No Music Allowed in the MRI?

April 1st. Going for an MRI. 

If you are having your brain scanned on April Fools I think you should bring the most obnoxious music possible. If nothing if note appears on your MRI, cool, you have your lucky obnoxious music to thank. If something sinister results you can at least blame that evil fucking dubstep. Win. Win. 

Lame. I was told on the phone that I could bring a CD to play. Once I got in the back the tech said "No. Earplugs only. No music."
I don't get results back from my MRI and other testing until the 25th. 

Saturday, March 8, 2014

Visual Illusions

What I see during a seizure:
What I should see:

Monday, February 24, 2014

Wait, wait, wait.

Standing in line. 

Saturday, February 22, 2014

Visual illusions


Friday, February 21, 2014

Paresthesia

Tuesday, February 4, 2014

RX Outreach Rocks!

I am having seizures again. I am still uninsured. I, however, am grateful for what I do have and today what I have is 90 more days of medication which cost me $50. 
#rxswag 

Tuesday, January 21, 2014

The Glass is Not Half Empty

...it is a million miles away and I am having a seizure. 


Sunday, January 19, 2014

Don't Panic

Epilepsy sucks. Being uninsured sucks. 

If you applied under the Affordable Care Act last year, you, like me, may still be uninsured even if you qualify for coverage. If you receive a denial letter this month please read it very carefully, each and every word. 

I know how stressful being uninsured is. I know how much it sucks. I know that you, like me, do not sleep well; you toss and turn all night wondering if you will run out of medication before becoming insured; you dread not being helped in time; you dread dying in your sleep from SUDEP;  you wonder what is really going on in your brain. 

Without insurance, your medical care, like mine, is limited to discounted prescriptions provided by nonprofits and/or manufacturers and rare trips to a clinic or nurse practitioner. You do not have specialists. You do not have access to proper diagnostic testing. You do not have care. 

You are holding on to life by your fingertips in hopes of surviving. 

You do not have the luxury of sitting around and waiting. Life does not stand still and death is less compassionate about your plight than a Physician's Assistant who hasn't slept in three days. 

You live with a serious chronic condition which you realize must be controlled. 

I want you to read any insurance letters carefully. Even if a letter begins with the dreaded DENIED

I want you to see the letter I just received. 
"We DENIED your application..."

Panic. Panic! PANIC!!!! 

If this were a Choose Your Own Adventure book would you:
a. Rip up letter and throw in trash. 
b. Hope SUDEP takes you quickly
c. Notice the parenthetical "Continued on the back of this page." 

Don't panic. 
I'm going to go ahead and say it...

THE FUCK?!!

This is NOT an actual denial letter. The state has NOT processed my application in accordance with ACA yet. 

Have you received a similar letter? Tell me about it! Send me a Tweet.  @seizethediary