What’s shakin’? (Not me!)

msawarenessmonth
I can’t believe it’s already Friday of MS Awareness Week (though the whole month is MS Awareness Month), and I haven’t done a blog post. That seems kinda wrong.

To be fair, however, life has been challenging this week — lots of seizures. It was like I was back in Glendale when I was first diagnosed. I was just having them over and over again in what felt like a loop.

I called my MS specialist on Tuesday, but I haven’t heard back from him. His nurse called and scheduled me for the soonest opening, which is March 21st… two weeks from today. (He’s actually booked up through June!) I think I’m going to call and cancel it. I was having really intense pain in my lower back and unrelenting seizures when I called in the first place, and now, I’m pretty much fine. I only had 5 simple partials yesterday, which is nothing. I can handle some facial twitching.

Today, so far, I’m seizure-free, and my back feels fine. I was really worried when I called that I was still having a relapse, even though I took a medrol dose pack about 2 weeks ago. My body’s been acting so weird. I’m glad that it was just a pseudoexacerbation. I must have been fighting off a cold or something.

Increase Your MS Knowledge: What is a pseudoexacerbation?

From Health Central – “A pseudoexacerbation is a flare up of existing symptoms caused by another medical event, such as a urinary tract infection, flu, or elevated body temperature. Pseudo or not, it can stop you in your tracks as sure as any true exacerbation. However, new lesions are not being formed and your MS in not really progressing.

True MS exacerbations are caused by inflammation in the central nervous system which damages the myelin and disrupts the transmission of nerve signals, causing a wide variety of symptoms. This type of event can cause new symptoms and permanent damage, lasting from 24 hours to several months. Severe exacerbations may be treated with steroids in order to reduce inflammation and shorten the length of the exacerbation.”

So, for those of us with MS, we get to feel awful while also questioning ourselves to figure out if we might be sick or too hot or whatever before we even call our doctors to treat the problem. Basically, if I feel awful for 3-4 days, I’ll call a doctor. Otherwise, I assume everything weird that happens in my body is a pseudoexacerbation.

Pseudoexacerbations annoy me less than pseudoseizures.

Since I only tend to have seizures nowadays when I’m also experiencing other MS symptoms, I always think of my seizures as being part of MS… but when I initially began dealing with seizure disorder, doctors suggested that I also see a psychologist. While they could identify the epileptic activity that caused the simple partial seizures that I experience, they were stumped by the time travel (complex) seizures and thought it was likely that they were caused by subconscious psychological issues.

For over a year, I saw a psychologist and worked with EMDR (Eye Movement Desensitization & Reprocessing) Therapy. I’ve written a lot about it. It was immensely helpful to me. In fact, the majority of my seizures stopped, thanks to the work we did.

To give you an idea of how intense and repetitive the seizures were on Monday, I actually went so far as to contact my most recent therapist to see if we could do some work (potentially with EMDR), just in case any of these recent seizures are being caused by my subconscious. She said it was good self-care, so even though the vast majority of the seizures have abated, I’m still going to see her.

(Fun fact: I found out, after already starting the therapy, that the doctor responsible for the creation of EMDR therapy is actually the mother of one of my good friends. That was pretty cool to me. I’m a big fan of her work both in the realm of therapy and as a mother, because her son is a truly awesome person.)

46 Days of “Strict” Paleo

It’s Lent! You know, the time between Mardis Gras and Easter.

This Lent, instead of giving up caffeine, Adam suggested that, just like in 2012, we be strict with keeping paleo. We’re not doing another Whole 30 or attempting a Whole 46. We’re just doing regular Paleo, so we can still have a little honey and maple syrup here and there. In truth, I am pretty sure my Whole 46 was just regular paleo too, looking back on it.

The big challenge for us will be not cheating on the weekends, when we’re out with friends and family, or when we’re feeling sick. (The craving for wanton soup when I’ve got a head cold is damn near undeniable.)

To make things easier for us (and anyone else who happens to be interested), I created a meal plan for Lent. I even made sure that on Fridays we’re scheduled to eat seafood and not meat, for all the Catholics out there who still follow that rule. (Fortunately, Adam’s as devoutly Catholic as I am devoutly Jewish. He doesn’t really care much about following a tradition that was created to help the fishing economy just for tradition’s sake. I can’t say I blame him. It’s not like I keep kosher.)

Tonight’s dinner is Garlic Roasted Shrimp with Zucchini Pasta.
garlic shrimp

Hope you’re all doing well!

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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.

Healing Properly Is Not Easy

So for those of you who aren’t either regular readers of the blog, or who need to be caught up: I have multiple sclerosis as well as a seizure disorder brought on by perfectly placed lesions in my brain.

Some of my seizures are caused by the seizure disorder and can be characterized as “epileptic (though I do not have epilepsy!)” and some of my seizures can be characterized as “pseudoseizures” or seizures brought on by activity in the subconscious. (Yay, for fun time in psychology!)

Through a lot of work with several doctors, we discovered that my subconscious was actually showing me repressed memories, and that I was having PTSD flashbacks during the seizures. This began my work with EMDR (Eye Movement Desensitization and Reprocessing).

I don’t know that I’ve talked much about the effects that going through EMDR has on your life. Being a time traveler does not simply give one the sense of relief that the psychologists suggest, at least in the short term, because there is a backlash once you make certain changes that need to happen in your life. “Breaking cycles” hurts. That’s where the true bravery begins.

Sure, when you’ve got the paddles in your hands and your shrink across from you, and your eyes are closed in real life but in your mind’s eye, and through your body you’re facing the monsters of your youth with all of you, you feel that relief – and suddenly some of the pain that wracks your body leaves… and you gain back some of your mobility…

But back in real life, an hour or so later, you still have to actively choose to stay away from people who hurt you thoughtlessly. Even if you love them so much it hurts.

When you time travel back in order to heal, and you feel punishments and see things as a child all over again – things that have haunted you your whole life – things that happened by their hand or because of their neglect – and you come back and forgive them and then watch as things seem to happen all over again — you’re participating in it.

And that’s not learning or growing.

So, even though I love my mother more than words can say, and I’ve been torn up about this for days already, I’m holding firm on my stance of no contact outside of a family therapy setting right now, despite tomorrow being Mother’s Day. I’m not strong enough in my sense of self to not cave into the idea that everything bad that ever happened to me was somehow my fault for not showing her that I loved her enough.

I sort of hated Adam for calling the cops on me for walking into traffic at first. There were no cars coming. I mean, what says, “I love you” like 72 hours of involuntary commitment for being a harm to one’s self?

But then I realized something: Nothing does say “I love you” like “I won’t let you die.”

So, the least I can do for him is not restart the cycle, and let myself learn to heal.

Hell is for Children Because Perception is Not Reality.

I am an adult survivor of child abuse.

When I was a small child, and my parents were both working full time, my parents were left with very little option but to put me and my younger brother in daycare during days that we did not have school.

Without going into too much detail, I will simply say that one of the daycare workers was needlessly cruel to a number of the children at the daycare center, and in an effort to make me “more appreciative” for my mother and father, punished me in a number of ways. She would make threats toward my brother and in an effort to protect him (and myself) from any worse treatment, she had my constant compliance. When my Mom came to get me one day and saw me caring for the infants, she was so upset and offended that my parents immediately took us out of that daycare center.

But Mom and Dad didn’t press criminal charges against the daycare center. Nor did they press charges against the babysitters that physically abused my brother when he was an infant.

Now, you might be thinking that this news is shocking and offensive, and that my parents don’t care about me and my brother, but that’s the farthest thing from the truth. The fact of the matter is that my father understood how the American legal system worked because he was a state prosecutor. And unless you have compelling evidence that can prove guilt beyond a reasonable doubt, you ain’t got shit. So what’s most important at that point is caring for your children’s well-being and getting them out of that bad situation.

See, the first problem with the American legal system is that it is based on a flawed logical concept: that the perception of the jury is reality, when that is sometimes very far from the truth.

The idea that perception is reality is why there are innocent folks that can get convicted based on circumstantial evidence, and why guilty-as-sin motherfuckers can be walking the streets.

It’s also why millions of women believe in the false beauty ideals handed to them by the fashion industry. Dove did a great job of showing us our cognitive dissonance with this concept in their Campaign for Real Beauty.

At the end of the day, our system of law has less to do with justice and more to do with the perceptions of the folks on the jury, which can be as capricious as their choices in dress or in television shows.

Almost nobody listens to kids. Adults assume that they’re making stuff up. And in fact, it’s tough on prosecutors to put children on the stand because asking them to go through their traumas again on the stand causes them to go through their trauma all over again! And then, they get cross-examined, so that the defense can try to make them into liars in the eyes of the jury.

The second problem with the American legal system is that it is designed to show preferential treatment to the rich.

If you are poor and cannot afford an attorney, you are given a public defender who is not given the necessary and appropriate time to work your case. Folks who are rich can afford attorneys to work for them who can use their time solely on their client. Who do you think has a better chance of walking away from a crime they are accused of? Someone who is rich and has an attorney who has worked on only their case for a month, or someone who is poor and whose attorney got their case yesterday?

Because of the economic shift in the last 30 years, it is now required that a typical family, a mother and father with 2 kids – have 2 earners.

If “Mom” and “Dad” are both working, the kids must therefore be at the daycare center or with a nanny if they are not at their grandparents, which cannot be assumed, since their grandparents are likely working to take care of themselves, since they cannot depend on Social Security to take care of them. Therefore, they are more than likely not protected or cared for by a loving family member. You never know who is working there or who is protecting your child, and the ability to pay for quality child care is directly related to how much money you earn. (This matters, simply because I believe that the SuperRich/Corporations are subverting the American way of life and are slowly removing the natural right of any human to breed because we would not have the funds to properly sustain and protect ourselves and our offspring in a way that does not lead to criminal behavior.)

Despite the fact that my parents made sure that every daycare center they put my brother and me in was licensed and bonded, I still suffered at the hands of someone who I later re-met in a mental hospital in 2003. I had checked myself in for suicidal depression. She was there, red-banded (That’s when you’re not allowed out of the ward because you’re considered a harm to yourself and potentially others.), and even said to me that she knew I was there and that it was her fault, and that she was sorry. She was schizophrenic, a prior drug addict, and alcoholic, and was constantly suicidal. She had been ordered in the hospital after being convicted on multiple counts of child abuse at the job.

And I didn’t even remember the abuse clearly until all these years later when I was working with EMDR to help get rid of my seizures! Ha! How’s that for psychology ringin’ the old noggin. At least I forgave her in group back then, and I remember learning all about the horrible things her parents put her through as a child with their abuse and whatnot. Sick lady gave me some bad information about my Momma. She never thought I was that kind of unappreciative. Skewed my whole perspective on the world for my whole life so far. But sick folks don’t mean it bad… That’s what sickness is.

So how do you protect the little folks from big ole meanies like bad babysitters or the Chinese Government, who made sure that 50 million or so of their infant daughters died so that they kept their population under control?

You keep a close watch on them, and you make sure that they know that you love them all the time and that they always know that they should talk to you about anything that doesn’t sound or feel right, and that they shouldn’t ever feel the need to be afraid of you, and if they do, there’s something wrong.

And you protect them when they’re too young to protect themselves.

Please write to your state legislature today, asking them to bring a constitutional convention to pass a new amendment to the U.S. Constitution – one that does not equate the worth of child with limitless potential to a corporation.

We have to close the open hole in our government that could allow China’s policies to hurt our daughters.
They are too precious to lose.

E.M.D.R. – Eye Movement Desensitization and Reprocessing

So, I took a break from blogging on In It For The Parking for a while, as I am sure you notice if you are looking at the archive or are a regular reader.

Part of having a seizure disorder for me is having both epileptic (meaning “responsive to medicine”) seizures and non-epileptic seizures.

Hearing from your neurologist that they’ve come as far as they can go, and that the rest of your seizures are “up to you” so to speak is never an easy thing to accept, but that’s exactly what happened for me. I was left with 1-2 seizures per day, but I noticed that there were times where it was much worse.

The name they give non-epileptic seizures is so demeaning because it sounds as though the seizures are make-believe Pseudoseizures. No lie. It’s not like you could create them if you wanted to. Clearly, it’s your subconscious or unconscious mind that has picked up a new trick — it’s found a new way to make you do things it wants you to do. Anyway, according to Dr. S, when I asked him, the way to fix pseudoseizures is always with psychological help.

Since I’ve been in and out of therapy for the last 7 years of my life (by choice!), I had no trouble looking my therapist in the face and saying, “Ann, this might sound nuts, but can you cure my seizures?”

I first heard about E.M.D.R. when I was at Lakeside. They had suggested it would help me, and my therapist happens to be trained in it, so I asked her if perhaps it might help. She brightened at the suggestion, and so we discussed what all it included, how long it could last, how scary it could get (and I had no idea in my particular situation how scary that was) and how much better you could feel afterward.

I will be the first person to say that E.M.D.R. is excellent and something that I would recommend wholeheartedly to people who are looking to maximize what they can get out of therapy, but who are also prepared to do some really hard work — because it “unpacks” all of your repressed memories and hurts. It’s better than pharmaceuticals, but it’s like Bactene for the soul. Some of the stuff stings like holy hell, but once it’s out, and you’ve worked on it with E.M.D.R., talking about it doesn’t hurt, and thinking about the stuff doesn’t have the same feelings at all.

I’m not going to go into all that we’ve uncovered. That’s what my sessions are for, but I will say that I have many fewer seizures now! And I am doing the (sometimes very) hard work to be a happier person. I’m learning that I’m like one of those cool clingie flowering vines that grows around stuff. I find the light. That’s just who I am. It doesn’t matter how messed up some of the stuff in my life might have been at some times, I just dealt with it, and flowered anyway. And really, that’s the way to be.

Now, I have the opportunity to look at the stuff I learned wrong and get things right before I start in on having my own kids — and that’s an opportunity most parents never get. At least not with the aid of a trained professional. 🙂

Lack of Nortriptyline and Red Tape Relapses, Courtesy of Anthem Blue Cross

I don’t think, prior to this past 5 day fiesta, I realized just how powerful and important nortriptyline is in my life.

I take nortriptyline for its ability to block neuropathic pain. Without it, I hurt all over. Well, not ALL over, but my legs hurt like holy hell, especially near the hip joints and knees and my forearms and my back hurt too. It’s kind of a seething, constant pain that sucks my will to live because it hurts so bad it overtakes my conscious thoughts. It stops me from moving, and it stops me from restful sleep. Without restful sleep, I have *tons* more seizures – the epileptic kind, not the kind that we’re able to affect and get rid of thanks to EMDR.

Fortunately, 20 mg of nortriptyline a night takes care of it. It also happens to be a tricyclic antidepressant, which gives me the added benefit of helping me cope with, well, all of the fun and frolic that is life with MS, seizure disorder, and now PTSD. (I think I forgot to write about that in the blog. I’ve been meaning to write a good entry about EMDR and PTSD and about how some of my seizures are actually flashbacks due to repressed memories of abuse…)

Anyway, I ran out of my nortriptyline prescription on Friday of last week, and we called it in to the pharmacy. They said they would contact the doctor. Standard, right? It would be, if Pasadena Rehabilitation Center had refilled the medication. But the doctor wouldn’t refill it because we haven’t been in for a visit this month. Not at all standard for us. Sudden withdrawal symptoms for this medication include headache, nausea, and weakness. That is, of course, unless you’re a Rae. Then it also includes “zomg-so-much-fucking-pain!!!”, sleepless nights, and lots of seizures.

This begs 2 questions in my mind. 1.) Why wouldn’t Anthem Blue Cross allow me to go back to Pasadena Rehabilitation Center for my monthly visit? I already have a $178 bill sitting at home where Anthem just didn’t pay for the visit because they said they didn’t approve that visit. 2.) Why wouldn’t Pasadena Rehabilitation Center refill my nortriptyline?

Fast forward to TUESDAY because on Monday, no one would return my calls, not even my primary care physician. Adam, my husband-turned-champion calls all the doctors. By Tuesday, I was in so much pain I couldn’t even think straight. He came to find out that it all comes down to money and protecting people. Pasadena Rehabilitation Center has a policy of only prescribing enough pills for one month because for many of their patients they have to give them opiates for their pain. But there’s no street value for nortriptyline. Thus, there’s no reason for them denying me my medication aside from the fact that they want more money from us.

So the only question left is why wouldn’t Anthem Blue Cross allow me to go back to my Pain Management Specialist. And I think that one’s pretty obvious. Anthem’s in the business of denying benefits and accepting premiums.

This means that while I give them $788 every two months for my care (And yes, you are remembering right that the government only provides me with $758 every month, thirty dollars LESS than that for those of you who are slow with mental math, they denied me access to my pain management specialist, and thus my pain medication, causing immense pain, seizures, nausea, sleeplessness, headaches (a really intense one that caused me to miss a good party to boot!), weakness, and an inability to go do things, for no reason other than that they wanted to make more money. My premium, which is more than half of the money I have to live off per month is not enough.

I still don’t receive Medicare benefits until March.

So how am I able to feel well enough to type today? Adam called the on-call doctor for Pasadena Rehab after-hours (That brilliant man of mine!), explained this whole situation, and that doctor, understanding the situation in its fullness, took pity on me and gave me 1 week’s worth of it, enough time to get the situation sorted.

Thankfully, we’ve gotten my psychiatrist, Dr. El, to agree to prescribe the nortriptyline from now on. Now to find someone to prescribe the baclofen. Maybe Dr. G., my MS neurologist, will feel comfortable with that one.

Credit, it all of its forms.

First, credit where credit is due!

CONGRATULATIONS TO MY BROTHER, DANIEL, ON PASSING THE CALIFORNIA BAR EXAM ON HIS FIRST TRY! YOU, SIR, ARE TRULY COMPETENT!!!

Seriously, words can’t describe how proud I am of my brother. He is as smart as can be, twice as clever, and is going to make an excellent attorney. Though I doubt he’ll have as much *fun* practicing as I would, since he’s interested in business, international relations, finance, securities, and the like. He’s going to be making money. 🙂 (What? We can’t all use our advanced degrees to get into movie premieres and concerts and awesome clubs and hanging out with people who make art. Some people must concern themselves with important work, like dealing with big business and buying and selling incredibly posh homes and whatnot.) 🙂

Secondly, I’d like to give the Federal government, specifically the DEA, a great big noogie.

The Full Faith And Credit Clause of the Constitution is becoming more and more of a joke, thanks to an unnecessary prohibition of helpful medication.

There are 15 states in the union that have legalized marijuana for medicinal use. One of which, obviously is California. Another is Nevada, which is a very recent thing. This excited me because as someone who has studied the law, I know that it is legal for me to use my medicine in my home, but it is not legal for me to bring it in the car to my parents house when I visit for Thanksgiving because it is interstate drug trafficking, technically speaking. I was hoping that this trip, since they have recently opened about 15 dispensaries in the Las Vegas area that I could follow federal law and leave my necessary medicine at home and purchase some in the great state of Nevada, thus following the laws of both California and the Federal government while bringing new business to NV.

To this end, I called one of the local Las Vegas dispensaries, only to find out that you must be a Nevada resident and have a Nevada recommendation to become a member of one of their clubs and purchase medicine. They do not accept doctors recommendations from CA.

Isn’t that terrible? Locals only.

Now, I know that President Obama, son-in-law to a multiple sclerosis sufferer, has specifically told the DEA not to prosecute medical marijuana users, so I shouldn’t flip out about this, but these are the things my law brain thinks about. I guess if you have a condition that requires MMJ, you just shouldn’t travel at this point in history, or you should just not be worried about bringing it with you from home. *shrug*

Next, I want to talk about something that I think we all do from time to time, whether you have an illness or not: buying yourself time to process things that have happened in your life by repressing your emotions, only to later pay the price.

Paying the Piper: When Repressed Memories and Emotions Affect Today. Why it’s no good living on Emotional Credit.

I finally realized yesterday that a big part of what’s going on with me has to do with dealing with some extremely bad stuff that happened in my past that I simply repressed to the point of not acknowledging or even remembering, and that my body and psyche is simply dealing with it now. I become suicidal or violent to myself when I hit at things that I simply cannot process without changing my whole world view. I just…flip out or seize. It’s like pushing some kind of button. Add that to the emotional lability and I’m like a loaded gun, ready to go off, with a lack of understanding of my place in the world when sudden flashbacks happen. It’s not good for me or for anyone who loves me. Apparently, my mind is like a trained rottweiler. It’s just been trained incorrectly, and there’s very little I can do but try to accept that things are as they are and work to retrain it.

Finding out that a lot of my seizures are my brain trying to protect me from necessary (but painful) personal growth is frustrating to say the least. Needless to say while some people have a hard time being wrong, this puts it in a whole other category. And here I thought I was humble. Apparently not. Still, it suggests that the work with EMDR should alleviate many of the seizures I do have. So that’s something.

At least I can give myself credit for doing the hard work and not giving up.