SSDD. (Same shit, different day.)

Time Traveler’s Log

Yesterday, I had another time travel seizure. Fortunately, nowadays, they’re much more rare. Unfortunately, because they’re so rare, they really shake me when they happen. If we’re friends on FB, you’ve already read most of this section, but I wanted to blog it so I don’t lose it and because there are a lot of folks who are not on FB who I think will appreciate it.

Sometime around 2 p.m. yesterday, I had a complex seizure. I woke up very confused. I had no idea where I was. The last thing I could remember was going to sleep next to Chris in my apartment in Boston in 2000. This laptop was open on my lap, though, open to Facebook, and according to the computer, it was 2014. I didn’t recognize my apartment, my pets, or the name next to my picture.

I clicked my picture. The page it surfed to (my timeline) had a name on it that I recognized (Rachael Shapiro) and it said that I was married to someone named Adam, so I messaged him but he didn’t type back. It also said I had a webpage, so I visited it and got very confused about why I would be writing about MS, seizure disorder, or the paleo diet. I read several entries and felt bad for whoever wrote them. (guh.) I saw on the FB page that it said I had gone to law school. That’s when I decided I was clearly having a bad dream.

I looked all over the apartment and couldn’t find a telephone, and Adam’s timeline page didn’t have his phone number anyway. The TV was playing the same 3 songs over and over again. (I now know I had been having several seizures and in an attempt to stop time travel from occurring, had set up Spotify to play my post-ictal playlist. There were 3 songs there that were supposed to make me remember when I am. It failed. Last night, we added several more songs.)

The next thing I knew, this thing that looks like a TV but that’s the same size as a deck of cards started playing the same music over and over again. I couldn’t make it stop. I kept pushing the green button on the screen that looked like a telephone, but nothing happened. I kept shouting, “Hello?” “Pick up.” “Answer.” and nothing happened. I pushed on the green button again and slid my finger in the direction of the arrows (towards the red button), and that worked. Surprise! It’s a phone. (?!?)

Nearly 24 hours later, I still feel stupid for not recognizing it as a phone.

Adam assured me that this was not a bad dream and walked me through using a program that looks a lot like WinAmp (apparently Spotify) to find a song that helped some of my memories come back. “Call Me Maybe” was the song that worked. I immediately remembered being on I-55 on the way back to Nick’s house after a neurology appointment.

Eventually, my memories came back to bring me up to date. I hate that sort of confusion.

Making Time Travel Easier

In an effort to curb some of the absolute terror that I feel when I go through this stuff, I wrote myself an email. I’m going to post it here too, just in case I end up on this site before I end up on email. Here it is!

Hey, me!

This is Past Rachael, with an important message for Future (present) Rachael.

First of all, everything is okay. I know you’re feeling sick and panicked, but everything will be alright if you read through this email and react calmly.

I’ve been through this situation so many times before that I wanted to find an easier/better way to handle things. I decided to write this to let you know what’s going on and how to get through it! These are things that I know you will want to know if you just woke up, and you’re really confused about where you are, how you got there, and/or how you look.

1.) This is not a dream. You had a seizure! You were not in a car accident, and nobody beat you up. Do you feel like someone hit you upside the back of your head with a 2×4? Are you either super sick at your stomach and think you’re going to puke or super hungry and panicky about it? Those things are completely normal when you’ve just had a complex seizure. Take a few deep breaths and keep reading.

2.) Call your husband, Adam.

You will not find a regular old-school telephone anywhere in your apartment. You do have a cell phone.

It looks like this:
It has a purple rubber cover on it, and is about the size of a deck of cards. It’s usually on the arm of the couch, charging. Sometimes, you accidentally leave it in your jacket pocket.

Press the button on the right hand side of the phone, and the screen will light up. Press your finger on the screen and move it to the side, and you should see a home screen. If that’s not what you see, press the little house icon on the bottom of the phone. A screen that looks like a desktop should appear.

Click on the “Phone” icon. It will bring up a dialer program. You can either type in Adam’s number and then press the green phone icon to dial, or you can press and hold down the number 2 and speed dial will dial him for you.

Don’t trust me that your husband’s name is Adam? Think you’re either too young to get married or that you’re still married to Chris? That’s post-ictal (after-seizure) confusion messing with your mind.

You’ve been with Adam since 2006. (That would be 7 years as of the writing of this email.) He was in the room, holding your hand, both times when you were diagnosed — first with multiple sclerosis, and second with seizure disorder. He knows your illnesses better than you do, and he loves you deeply. No one on the face of the planet will be able to offer you more comfort, support, or direction than he will.

Adam and I’ve been through this kind of confusion together a ton of times. You can trust me about who you’re married to and who is safe because I’m you!

Not convinced? Doubting that this is real? Still feeling like calling a “stranger” is a bad idea? Call Mom! She is always speed dial #5 on your phone. Follow the instructions that are above and press and hold down 5 to get Mom. She will probably be a bit upset by the news, and she might get flustered when it happens, but she knows what’s going on. Odds are, she will call Adam immediately if you haven’t already.

Can’t get in touch with Adam or Mom over the phone? EMAIL THEM. You’ve been using webmail since Shadowscape, so I’m hoping you don’t need directions.

To make life even easier on you right now, I added them to the email you will find in your Inbox (It’s the same as what you’re reading!) as recipients so that you just have to “reply to all” on that email, and you’ll get in touch with both of them. It doesn’t get a lot easier than that.

3.) Listen to some music that might jog your memory. I’d say “Turn on Spotify and pull up the post-ictal playlist” but that’s a lot of work for someone who doesn’t know what’s going on. Our TV setup is not simple.

Here are some links to songs that ought to make everything easier.

Click here to listen to “Call Me Maybe” by Carly Rae Jespen.  This song has a strong association in your mind. It usually brings you back up to 2012. If you’ve got that knowledge, it’s a lot easier to do more to help yourself because you understand what’s going on with your body and why you’re in Chicago. (Yes, you’re in Chicago.)

Click here to listen to “Timber” by Pitbull & Ke$ha. This admittedly annoying song usually brings you back to November 2013. Your brain’s not messing with you. You *do* have a cardiologist now. You’re following a diet and exercising regularly to treat hypertension.

Click here to listen to “Happy” by Pharell Williams. If we’re lucky, this will bring you back to February of 2014. That’s where I am right now.

4.) Treat your pain. Look around at the coffee table and the boxes under it. Do you have any marijuana? If so, it will probably be in one of those orange prescription pill containers to keep it airtight. If you can, pack yourself a bowl and smoke it. It will help your headache, your stomach ache, and your anxiety. Seriously.

I know it probably sounds crazy, considering how anti-drug you were raised, but it really is a good idea to smoke some weed. Multiple doctors (reputable psychiatrists and neurologists!) have actually prescribed this for you. You’re not doing anything wrong by smoking it. You’ve got MS and a seizure disorder, and it’s good medicine for both.

5.) Relax. Just find a couch and chill. There’s honestly nothing you can do right now, other than what I’ve listed above, that will be helpful in any capacity, so it’s not worth fretting about. Nothing bad will happen if you don’t clean.

Other important things:
This is not a punishment of any kind. God does not hate you. You didn’t do anything to deserve this. Don’t take a bath. It might feel like a good idea, but getting overheated is dangerous for you.

I hope this helps!

Me & My Big Mouth

Sometimes, I should just keep quiet.

Yesterday, I posted about how I planned to work out every day, regardless of fatigue. I was proud of the work I’d done on Tuesday, and thought I could maintain a tough attitude and get the job done no matter what. Honestly, it sounded like a great idea!  That is, until I got to the gym, was stretching before we started, and had a cluster of 3 or 4 seizures in a row. Adam told me in no uncertain terms that we were going home, and to stop trying to force myself to exercise. He didn’t want me to hurt myself.

Last night’s shaky fun-fest lasted most of the evening. I had so many seizures that I honestly lost count. It’s been a while since I was laid out like that. I vaguely remember being confused about where I was when we were on the car ride home, and I definitely remember being incredibly itchy, especially around my wrists, my neck, the middle of my back, and my toes. Adam suggested that the itching might be an aura, because it was most intense just before having another seizure.

Cannabis to the Rescue!

Adam thought that the itching was probably neuropathic, and not caused by allergies or anything else, because it came on all of the sudden and scratching didn’t make it stop. He suggested that I smoke a little to see if it helps. Not only did it make the seizures stop, but it also made the itching stop.

On January 1st, the medical marijuana pilot program in IL was slated to start. I haven’t read anything about it since then. No idea if people are actually running dispensaries yet or what, but I’m definitely going to ask my doctors to write me a recommendation. Fortunately, I don’t have to wait long. I have appointments coming up with both of my neurologists. I see my epileptologist on Tuesday of this coming week, and then I see my MS specialist on Tuesday of the following week. I’m hopeful that one of them will write it. I refuse to get back on any seizure meds because we’re planning to get pregnant and the seizure meds never helped me anyway. The only thing I can think that might be helpful would be a medrol dose pack, and only if this continues, because it would mean that I’m dealing with a relapse.

Under Pressure…

I’m also scheduled to see my cardiologist on Thursday of this coming week. That means I need to find or fudge my blood pressure journal. I have no idea where I put that piece of paper… but I do remember some of the numbers. So far, limiting sodium and taking the amlodipine and hydrochlorathiazide seems to be making a positive difference. My morning blood pressure has dropped from 165/105 to 141/91. It’s still not awesome, but it’s headed in the right direction.

Yoga tonight!

Tonight, Adam and I have plans to attend the 7:30 p.m. yoga class at our gym. They didn’t have night time yoga during the fall session, so I’m very glad to see they have it back at least 1 night a week. I love yoga. It’s simultaneously relaxing and challenging, and it makes me feel strong. There are also tons of sources out there that suggest that yoga is particularly helpful for folks with MS.

So, I missed 1 day of working out, thanks to seizures. It’s not the worst thing in the world, provided that I get back to it. If the seizures taught me anything last night, it’s to not write checks my ass can’t cash. I just have to keep doing my best.

Time Travel – Without The Doctor.

Prior to last night, it had been a long time since the last time I had time travel seizures. Yesterday, however was full up on wonkiness.

On the one hand, I’m very lucky that since I quit taking Cymbalta and Abilify in December of 2012, I’ve had several good weeks without any seizures at all, and that on the other weeks, the few seizures I did have were primarily simple partial seizures that made muscles in my face and neck behave incorrectly, as opposed to complex seizures that leave me feeling like I’ve been picked up and transported to another location while drugged.

On the other hand, there are some really good things about experiencing “time travel.” It gives me perspective on my life that I wouldn’t otherwise have.

For example: Yesterday, I remember the post-ictal confusion from one of the seizures fairly clearly… I thought I was 9 years old, that I had both Wordly Wise and long division homework to do (which was important!), and I had a very hard time accepting that my body was this big, that I was married (and my parents knew about it!), and that technology had come as far as it has. I was sure that Adam was super-rich because he had the biggest computer screen I’d ever seen. This was, of course, our television set which is hooked up to a desktop computer.

I actually asked Adam if his computer had Alf’s Geography Jam, because that and Carmen Sandiego were the best games we had on our computer at “my house” (otherwise known as my parents house, circa 1989), and I was pretty good at them. Needless to say, he laughed pretty hard at that one.

Anyway, getting back to that whole “perspective” thing: there were important lessons contained in last night’s episode for me.

1.) I was sure we were very wealthy, just based on looking around the living room.  Do you know what that means?  It means we are rich. We may be saving for a house, constantly checking and working on our budget, and living in an apartment in an area of town that is not the best… but my 9-year-old self’s idea of what it was to be rich has been achieved. I mean, we have more than 1 computer, a TV that fills most of a wall and also plays computer games, comfortable couches, and a dog who actually comes to me to snuggle when I call him. 9-year-old me thinks she hit the jackpot of possible futures…and that makes me happy.

2.) My husband is just unbelievably amazing and handsome and loving and perfect. During the whole situation, he didn’t once treat me like I was losing my mind. He spoke with me respectfully and patiently. He gave me hugs when I couldn’t stop crying because I was scared. (I didn’t know where I was or how to get home! Or why my back was tingling and burning. Or why my head and stomach hurt so much.) and apparently, I went through time travel multiple times yesterday.  (I only remember the last one.) I can’t begin to understand where his patience and compassion come from, but I am immensely grateful for both.

3.) “Little me” was very disappointed in the distinct lack of chocolate chip cookies in my home. I remember saying, “But I promised myself that when I was old enough and had my own place, I’d bake chocolate chip cookies all the time so I could have them whenever I wanted them.”  This morning, even though I know that it’s not good for my diet, I still feel compelled to bake them. (Don’t worry, I’m not going to walk to the grocery store today.)

4.) Seeing myself in the mirror, even after I’d been brought back to present time, felt like looking at a stranger. Inside I was like, “OH NO! I got old!” but I also thought that I had gotten a lot prettier. So, there’s a plus.  I didn’t judge myself negatively for my weight. It’s a practice that I’d like to continue.

5.) Cell phones are MAGIC. I think we’re all so used to them by now that they seem mundane, but from a 1989-1990 perspective, they are the coolest things ever. Adam tried to show me my phone when it was ringing, and I was like, “That’s not a phone.” Really, we have handheld computers that happen to be able to make phone calls from anywhere. (And of course, since I have my own and Adam has his own, we’re clearly bazillionaires.)

I titled today’s post “Time Travel – Without The Doctor” because yesterday, Adam didn’t use the Doctor Who theme song to help bring me back out of my confusion.  When I first began experiencing this kind of post-ictal confusion, it was the Doctor Who theme song that got me back to present-day Rae.  Instead, he used Spotify to play pop music that had just recently been released, to try to bring my memory back to present times.

I marveled at Spotify. I absolutely gawked. The ability to play whatever song you want, whenever you want to, on your TV? It blew my mind.

What really hit home for me from yesterday’s experience is that we are living in amazing times, where technology exceeds anything we could have imagined 25 years ago.  It makes me very hopeful for the future. It makes me very grateful for the present.

Surprisingly enough, this relapse isn’t being treated with solu-medrol… just a medrol dose pack. It’s been nearly 3 years since my last time with IV drips. I’m fairly certain that’s a good thing. I just am really hoping that the oral steroids kick this relapse’s ass.

This morning, my back is tingling/burning like crazy, thinking is like wading through a river of pudding, my left foot is numb in places, the top left part of my chest is so numb that when I touch there, I can only acknowledge pressure, and I’m still just happy that I’m living in today’s day and age and that I was able to get out of bed. (Even if I’m seriously considering a nap in a few minutes.)

For anyone that’s concerned, I’m still on Gilenya. I’ve almost finished my first month on it. I don’t know if it’s doing any good at all yet, but the few side effects that I’ve experienced are still better than the intense pain I experienced on Tecfidera. I’m also extremely grateful for the efficacy of a small amount of marijuana. It makes my back hurt a lot less and decreases my anxiety over numbness in other places in my body. I’m really looking forward to January, when it becomes legal for medicinal use here in Chicago and I can get a mini-vape like a Cannacig.

Medical Marijuana Is Coming To IL.

So, a friend of mine has started to blog her journey through the wonderful world of medical marijuana, and I have to say, quite honestly, that I am more than a little jealous of her ability to access premade edibles, whatever strain of cannabis she is interested in, and the safety of doing all of that in CA, where you can just walk into a respectable dispensary instead of finding out if a friend of a friend of a friend has a hookup.

Here in IL, the House and the Senate already passed “The Compassionate Use of Medical Cannabis Pilot Program Act” months ago… (like mid-May!) and we’ve all been impatiently awaiting Governor Quinn’s signature.  Our wait is about to be over.

Under Illinois law (Article IV of the Illinois Constitution, Section 9), if the Governor fails to sign or veto a bill within 60 days of receiving it from the legislature, the bill automatically becomes law.  Governor Quinn received the bill on June 5, and August 4th is only 5 days away.

CA is still way better than IL… at least when it comes to weed law.

Now, there are some serious differences between the laws in CA and the laws that will exist in IL if this bill goes into effect next week… differences that I think make CA’s program far better for patients.

1.) In CA, patients are allowed to grow their own plants, the limit being 6 mature or 12 immature plants.  HB1 would not permit patients or caregivers in IL to cultivate cannabis.  In fact, cultivation would only be allowed at 22 specific, strictly regulated cultivation centers (1 per state police district).   While I can appreciate that our IL lawmakers want to make sure that labeling, safety, security, and record keeping are good, it seems very “pro-business” to only allow patients to acquire their medical marijuana from state-regulated dispensing organizations, which would purchase cannabis from state-regulated cultivation centers.

2.) In CA, there is no waiting period between receiving a recommendation for cannabis and your ability to go to a dispensary to purchase some. In fact, there are “weed doctors” all over the place. You go to a doctor whose whole business is giving referrals, pay your $60-80 for your referral (assuming you have a legitimate condition), and can go straight to a licensed dispensary afterward.

According to HB1, patients in IL will need to get a recommendation from the doctor who handles the condition that necessitates the use of cannabis (meaning that I’m going to have to get my recommendation from my MS neurologist), then send a copy of the written certification to the Illinois Department of Public Health (DPH), and DPH would issue an ID card after verifying the information. (No idea how long it’ll take to get that bad boy in the mail.)

3.) In CA, no state-issued ID card is necessary. All that is needed is a physician’s statement saying that marijuana is “approved” or “recommended.”  In IL, patients must have a state-issued ID, or they will not be able to avail themselves of the protections of HB1 or able to purchase marijuana from a dispensary.

4.) In CA, epilepsy and seizure disorder patients are allowed access to medical cannabis. Cannabis is sometimes very helpful for folks with epilepsy and seizure disorder, but in IL, you must have one of the following conditions, or you’re not considered eligible for patient access: cancer, glaucoma, HIV/AIDS, hepatitis C, amyotrophic lateral sclerosis (ALS), Crohn’s disease, agitation of Alzheimer’s disease, cachexia/wasting syndrome, muscular dystrophy, severe fibromyalgia, spinal cord disease, Tarlov cysts, hydromyelia, syringomyelia, spinal cord injury, traumatic brain injury and post-concussion syndrome, multiple sclerosis, Arnold Chiari malformation, Spinocerebellar Ataxia (SCA), Parkinson’s disease, Tourette’s syndrome, Myoclonus, Dystonia, Reflex Sympathetic Dystrophy (RSD), Causalgia, CRPS, Neurofibromatosis, Chronic Inflammatory Demyelinating Polyneuropathy, Sjogren’s syndrome, Lupus, Interstitial Cystitis, Myasthenia Gravis, Hydrocephalus, nail patella syndrome, or residual limb pain.

5.) In CA, minor patients are treated just like adults if they have parental consent.  In IL, even if your child has terminal cancer, they’re not allowed to be a part of the medical cannabis program.  There is absolutely no reason, when the program is this stringently regulated by the state, that the arbitrary age of 18 should have anything to do with the use of medication to ease suffering.

6.) In CA, you can go to different dispensaries to decide which one you want to give your business to. In IL, a patient must designate only one dispensing organization where he or she would be able to receive medical cannabis.

7.) In CA, you can always use medical cannabis in the privacy of your home. In IL, it’s specifically stated that landlords can prohibit smoking on the premises of leased property… so even though you can’t use cannabis at a dispensing organization, in any public place, or in the view of minors, you also might not be able to use it at home either.

If you can’t use it in public or in private, where is it safe?

I guess there are always edibles.

Baby-steps Forward

The Compassionate Use of Medical Cannabis Pilot Program Act only sets up a 4-year pilot program here in IL.  This means that unpalatable features of the law (like “no use for epilepsy or for minors with terminal diseases” – or the inability to shop for a dispensary) may be changed in a relatively short amount of time.

As someone with multiple sclerosis who was able to treat her muscle spasticity and pain using specific strains of cannabis in CA (prior to moving to IL), this is a huge leap forward.  I am looking very forward to being able to procure this medication in a lawful way and to get exactly the kind of cannabis that I need. I can honestly say that the ability to make knowledgeable decisions about what “flavor” of cannabis I’m using makes a huge difference in the effectiveness of use.

I am also looking forward to once again have the ability to purchase edibles and to look into new vaporizer technology (like marijuana e-cigs).

But what if Quinn vetoes at the last minute?

If Governor Quinn decides to veto the bill right at the last minute (which I seriously doubt will happen), it might end up being law anyway.

IL Constitution, Article IV, Section 9(c) provides: If within 15 calendar days after such entry that house by a record vote of three-fifths of the members elected passes the bill, it shall be delivered immediately to the second house. If within 15 calendar days after such delivery the second house by a record vote of three-fifths of the members elected passes the bill, it shall become law.

In English (for those who don’t speak legalese): If Governor Quinn vetoes, the bill gets sent back to the House (who originally voted 61-57) for a second vote which must occur within 15 days. If, in this second vote, at least 71 representatives (only 10 more!) support the bill, it will move to the Senate (which originally voted 35-21). If, in the second Senate vote (which must occur within 15 days of the House vote), at least 33 representatives (2 fewer!) support the bill, it will be signed into law, regardless of the governor’s objections.

It doesn’t appear, however, that Governor Quinn actually has any objections. From everything I’ve read, he supports the measure.  The last thing he said on record was, “It’s an important bill. I’m going to look at the bill from top to bottom, as we do every bill.  But I’m very open minded on this.”

By choosing to let the bill become a law without his signature, Governor Quinn is making an astute political move — basically giving support to the measure while also taking the position that if things fuck up, it wasn’t his fault, since he had no opinion on the matter.

Smoke ’em if you got ’em!

Regardless of the many differences in law between IL and many of the other states that have compassionate use in place, having a program at all is a huge win for patients in the state.  It will help ease the suffering of thousands of IL residents.  (And probably create some really interesting food and art too.)

I am confident that IL will see a lot of benefit from having this program in place, both financially (from the 7% tax they are levying on cannabis) and criminally, as it will take business away from the black market.

*waves* Hello there.

If I didn’t know any better, I’d think I stopped caring about this blog at all. The truth of the matter is that I’ve just fallen out of the habit of journaling… and that’s not a good thing. So, today, I’ve decided to write, even if it’s a little disjointed.

What’s Going On With Me

Today marks the 20th day that I’ve been off any kind of disease-modifying drug for MS.  I have to say, I physically felt better when I was on Copaxone than I do now. Over the last 3 weeks, the numbness/tingling in my back has become more prominent; I’ve had a lot more fatigue; and cognitive fog has been almost constant.

Why am I not on Tecfidera yet?  Because you can’t do anything with MS medication without jumping through hoops of fire.

Last week, I found out that Humana/Medicare had denied my request to have Tecfidera as my DMD (disease modifying drug) because I had not already used every other available DMD on the market.

Why have I not been willing to take Avonex, Betaseron, Rebif, or Extavia? Because they’re all injectable interferon medications – and all of them cause depression. As someone who’s been treated for major depression for going on a decade now, my neurologist and I agreed that they would be bad for me.

I did some homework on the whole process of getting medication approved after a denial, and called Humana Greivances & Appeals. I asked for an expedited appeals process (which means they have 72 hours to make a decision because the medication is necessary for a life-threatening illness), and contacted my neurologist to get them supporting information as quickly as possible.  On Saturday, I found out that I have been approved!

So, now I’m just waiting for the mail-order specialty pharmacy to call me to schedule delivery. It occurs to me, as I write this, that I can and should expedite that process by being proactive and calling them instead.

Puff, Puff, Pass?

Speaking of medicine and expediting things… Medical marijuana has been passed in the IL house and senate. We’re just waiting for Governor Quinn to do the right thing and sign it into law. I’m trying not to think things like, “It’s been 20 days since you got it, Gov! Get on with it!” and instead am being patient.

I haven’t been using cannabis much at all over the last several months. There was a time when I lived in CA, was doing a lot of psychological work on my PTSD, and didn’t understand dosing (and thought I could make all my emotional and MS pain disappear with weed), when I smoked nearly all day, every day. I was, very simply, losing my mind then. I am very glad those days are behind me.  Now, I only use it when I have a bad PTSD flashback  (which, thankfully is very rare nowadays) or my other medications just can’t get the pain-management job done, and I’m pretty much desperate for relief.  I think the last time I had a friend source some for me was in December, and I only bought an eighth then. I’ve still got about half of it. This is a huge difference from the end of 2008-early 2009 when I was living in Glendale, CA, and went through about 3 eighths a month.

I still miss CA’s set-up though, and it’s what I’m really hoping for here in IL. I want my “license to use” and to be able to walk into a secure dispensary, see what’s available, and choose the medication that is right for my needs. I miss the opportunity to decide what kind of weed I’m getting!  There are more than a hundred strains of marijuana, and each one affects you differently.

When you’re in prohibition-land, you can’t be choosy. You take what you can find, and what you find is not always helpful. Sometimes, it’s even harmful. You could end up with a strong sativa that wakes up your body and leaves you mentally foggy when you actually need an indica that helps calm anxiety and ease pain that lets you continue functioning normally within your day. Getting the wrong kind of weed has happened to me more times than I’d like to admit since moving here.  This post by Berkeley Patients Care Collective goes into much more detail about this, and gives recommendations of types of strains for the medical needs you might have.

I’m also hopeful that the bill passes so that I can buy concentrates and use something like the CANNAcig. It would be very beneficial to be able to use what is essentially an e-cigarrete that’s been modified to work with cannabis. It is less smelly and has all the benefits of vaporizing versus smoking.

I also miss edibles, which are even better for helping with body issues and aren’t bad for your lungs at all. I remember when we were in CA, Adam and I talked about the possibility of me creating edibles for the dispensary that I used to go to. I really like cooking/baking.  Now that I’m not having seizures all day, I might be able to actually do something like that.

So What Am I Doing?

Right now, I’m still “just” a housewife. I do laundry and dishes. I go to the grocery store and I cook. Life’s simple, and that’s not bad. I really appreciate that I can take naps when I need to and that I’m able to give Adam freedom from some chores that he doesn’t particularly enjoy which I don’t find offensive.

I also have been working pretty hardcore on physical fitness, tracking my calories and nutrients on MyFitnessPal and working out 4-5 days a week at the YMCA up the street, doing weightlifting and cardio with ActivTrax. I wish this Y had late afternoon/early evening yoga classes like the YMCA in Collierville, TN did — but if I want to do yoga here, I’ve gotta get there at 8:45 a.m. Frankly, I couldn’t get myself to 9 a.m. classes in college and I barely made my 10 a.m. classes in law school. My sleep schedule has basically nixed group yoga for me for the time being.

Since the seizures have more-or-less disappeared (aside from when I have pseudoexacerbations, relapses, or am trying technology that doesn’t jive with seizures), I’ve done a lot of thinking about whether or not I want to take the IL bar exam and become an attorney, and when it comes right down to it, I do!  But the test costs $850 and the prep course costs $2050. This means that before I can even attempt the test, I have to find a way to earn $2900.

I’ve been applying for jobs for months now with no response. The economy is fucked, and no one wants to hire someone whose last real job was 8 years ago. I can’t say that I blame them. Who wants to hire an administrative assistant with a law degree when you can get one without a J.D. for cheaper and she won’t want to move forward with her life in a year?

This has lead to me realizing that I should just market my services as a web & graphic designer again.  I used to make about $450 -$500 per project when I was freelancing. 6 or 7 websites could mean that I get to take the exam. I’m even thinking about hitting up a good friend who has a successful web design firm to see if he would want to outsource any of his front-end design work to me.

I was concerned with the idea of freelancing somehow messing up my SSDI (I need to keep Medicare), but you’re allowed to earn up to $14,000 a year without it affecting your status. You just have to declare it.

This means that I need to create a site for myself as a designer, first and foremost. Next, I need to build my portfolio and see just what work I have on the web that’s still up there.  I am, of course, procrastinating on this, because, well, it’s what you do when you’re unsure of your plans.

What I am sure of, however, is that my life has at least a bit of forward trajectory at the moment, which is nice. There was a while where I was concerned that I’d become that girl who sits around at home and “does nothing” all day long because the work she actually accomplishes is mostly invisible. (There will always be dishes. There will always be laundry. The house will always need straightening.)  I’m not so concerned about that now.

I am, however, concerned that if I don’t stop writing and get off the computer, none of my invisible work will be done today — so I’ll wrap it up here and say thanks for reading. ❤

I’m not a complainer, but: Pain.

I am almost always dealing with some annoying amount of pain, but right now, it’s the kind that you’ve got to hit with something that makes you feel no pain or talk about it or cry about it or all of the above.

Sometimes, I get acidy burning sensations in my forearms, my left one especially, and it feels like I’m wearing a bracer of fire right now, going from my elbow to my wrist, and again at my shoulder and in my knuckles.

For all the positive talk I give about meditation, bio-feedback, and however smiley I can be — this MS is just a huge pain in the ass at times. I can handle pain; I take it well enough, but I don’t like how it just shows up out of nowhere. And you have no idea how long it’s going to last, and it turns you all hard and steely and hungry for a fight. It takes your day and stomps on it. Then, when your day gets back up and dusts itself out, it stomps on it again just to be sure it got the message.

My arm feels heavy, sore and bruised, especially towards the middle, and I know perfectly well that it’s fine, but that’s the kind of trick your head plays on you when you have MS. You can know you’re fine and feel the pain of something that never happened.

And I know there’s nothing that the doctors can do for me unless this bitchass pain sticks around for 2 or more days. Because otherwise, it’s a pseudo-exacerbation.

So you just feel like you’re fucking crazy and know that you aren’t, you’re just “misfiring” like a flesh robot with messed up wiring.

Enough self-pity; I’m going to do what I can to get some relief.

Edit: Not 15 minutes after I first published this, the pain subsided. This is the kind of madness that I go through. Bouts of extreme pain, followed by nothing.

I feel like I should be more grateful that the pain is inconsistent. I just wish there were no pain.

Pity Party for One

I am hurting today, and I’m taking a social media break. I never feel more lonely than when I’m in physical pain and am actually alone. I have a doctor’s appointment at 3:30, and it doesn’t seem to matter what I do to distract myself, nothing really can get my mind off of how achy I am all over, and how my side and feet are all pins and needles and my lower back feels like it’s on fire.

In CA, we could just go to a dispensary and get some medicinal cannabis to ease the pain of this, but it’s illegal in Illinois for some reason, even if you have MS.

Adam would joke that I’m “soupy shorts” but I think the word for it is straight up “mopey.”

The Distance Between Pain and Suffering

I am fortunate to be part of a group on Facebook for people in their 20s and 30s who have MS. On there, we discuss living with the condition: our ups and downs, and we help one another cope.

Recently, one of the members was talking about how hard it is to have our condition and to be surrounded by healthy family members who do not understand the levels of pain that we often reach, and sometimes are constantly mired in.

Empathy can only go so far when you’re not living in someone’s body. I know that no one knows exactly what I feel because no one is experiencing my physical feelings but me.

Neuropathic pain can be as simple, mild, irritating and annoying as that pins and needles feeling that you get when you’ve let a part of your body fall asleep, or it can be as heinous, torturous, and world-shattering as child-birth (or so I’ve heard). At its worst for me, it’s felt like a broken bone where nothing is broken.

And that’s the beauty of MS: it’s different all the time, for everyone. It just depends what neuron that demon disease has decided to chomp on at the moment.

That’s also one of the hardest things for those of us with MS, because we cannot anticipate where or when the pain is going to come. We just know that it will eventually show up.

The sudden pain (or even constant pain) can make it very difficult to relate to the people around us, whether it’s co-workers, friends, family members, or even the significant others we love most in the world. Because when the Big Bad Pain comes, it makes you hate everybody, even yourself, and the only thought you have at that moment is, “Make it stop.” Or, in the alternative, if you’re more emotional and less pragmatic, “I hate everything.”

There have been only 2 things that have helped me in this situation. 1.) Cannabis 2.) Meditation

This post is not about the wonders of weed. It’s a band-aid on a gaping wound for what I’m talking about right now. A bucket of water on a raging fire.

Right now, I want to talk about the space between pain and suffering, which actually can exist, and which widens with increased meditation practice.

Pain is going to hurt, no matter what, but you don’t have to suffer with thinking about how badly you feel. When you know what is causing the pain, you can acknowledge it and move on with your day (sometimes). Being able to separate the physical cause of emotional distress from your emotional state allows you to be more friendly and compassionate to everyone around you, and makes you a happier person overall.

Now, I’m not pushing any religious agenda here – just an activated mind-body connection. Heck, even researchers in Switzerland have shown that mindfulness meditation help those of us with multiple sclerosis with depression, fatigue and anxiety. There is even research documenting the positive effects of meditation for those of us with MS dating as far back as 2003 at the Multiple Sclerosis Resource Centre.

Meditation is really just as simple as sitting in a comfortable position, hands clasped, and focusing only on your breath for 20 minutes. You don’t need to do anything specific besides focus on your breath and clear your mind.

For those who would prefer to clear your mind while listening to a guided meditation for pain, here’s a good one.

I hope everyone has a peaceful, pain-free (or at least less painful!) day! Namaste. 🙂

Day 4 of 5: Current IV-SM Treatment – Important Side Effect Notes

Usually, this is the kind of thing I save for Patients Like Me, but after reading today’s Trauma Tuesday on PTSD and learning of the concept of “passive suicide” – something which, I’ve apparently been engaging in most of my life… (a lifestyle of recklessness and hanging around those who are reckless, not really caring if you get hurt; cept I’ve spent more of my life toeing the line on both sides… sometimes earned me the nickname “Goody toe shoes,” sometimes, “Mom,” and all too often, “Bitch.”) I feel it is somewhat necessary to say this:

Weed is a necessary drug.

I did not inhale cannabis this morning, as I usually do. When I did not do this, and I had my IV-SM infusion, I ended up a having horrible time with suicidal ideation today. I also experienced PTSD flashback memories. I just remembered them: no hallucinations or anything. It was just very vivid. I am referring to some of the repressed memories that I recovered during EMDR treatments.

It was not until I was willing to smoke out that I was able to calm down enough to be okay tonight. I needed Adam to tell me to use it before I realized I needed it because physically, the IV-SM was masking the pain entirely. I just kept suddenly crying and not knowing why.

I need to treat the medical marijuana exactly the same as I do my pills. I need to be better about measuring the stuff and when I take it.

Bright side: No seizures.

Oddly, I feel this is winning. Or at least in the right direction.

Dr. Oz’s Show on Medical Marijuana

Hey everybody!

My momma let me know that Dr. Oz did a show the other day on medical marijuana, and she was all excited because with me having MS & seizure disorder (and currently dealing with PTSD, though it’s starting to get much better!), it’s been a 180 in my family’s ethics going from a hardcore straight-edge no-drugs stance to being happy with the effects of medicinal cannabis, which has greatly improved the quality of my life. (One of the benefits of livin in CA!)

I believe that the decriminalization of medical marijuana is not only important but necessary to help thousands of people who share similar pains to me. Some of you might be interested in seeing the clips from the show too, so I tried to put them in the order of the show for you.

Medical Marijuana: The Hot Debate, Pt 1.

Medical Marijuana: The Hot Debate, Pt 2.
Montel makes the best points ever about how medical MJ helps and the current hypocrisy in federal law.)

Medical Marijuana and MS: One Woman’s Story,Pt 1.

Medical Marijuana and MS: One Woman’s Story,Pt 2.
My theory is that the bald guy with the glasses is totally unaware that he is the epitome of what a TV pinhead is supposed to be. Real asshole or paid asshole? You tell me. 🙂

Marijuana: Why It’s Prescribed, Pt 1.

Marijuana: Why It’s Prescribed, Pt 2.
This video actually has an epilepsy patient in it!

My seizure disorder is very similar to epilepsy and reacts very much like it. The only major difference between my seizure disorder and epilepsy is that it is not considered epilepsy because the electric activity of my seizures lines up directly with the footprint of the lesions in my brain that were caused by my MS. This is why the Ketogenic Diet (which was developed by my neurologist) won’t work for me, and why many of the usual medications that help folks with epilepsy tend to not work for me. Fortunately medical marijuana does! 🙂

Medical Marijuana: Is It Safe? Pt 1.

Medical Marijuana: Is It Safe? Pt 2.

Medical Marijuana: What This Means to Your State

Also, I thought folks might be interested in what states currently allow medical marijuana and what the laws are, so here is the NORML page that keeps current on all of that.

I hope y’all enjoy! Happy Saturday!